Electric and still...

Strength. 

It seems there is an inner source, perhaps for us all.  But, akin to the electricity in your home, it has to be connected the right way, or it can be quite dangerous.  I realized that so many wires in me have been unplugged, there have been cords whipping around, sparking, burning and cracking for a hell of a while now.  And a friend shared words.  About how there sure were a lot of "cant's" in my mouth, in my heart.  But so softly he said I can. Not just one or two power sources, or power borrowed like when you jump start a car.  He reached into my soul and found my outlets.  He was calm and simple and clear, and I imagined electrical tape fixing tears in the plastic and copper wires twisting back together.  The crazy thing is, nothing is actually fixed.  It just doesn't seem quite so dangerous inside me.  I still have to find the strength to hobble down the stairs at 4:00 a.m. to help with urinals and accidents and sheets. I still have to find a way to keep smiling and laughing and hugging my little ones.  I still have to figure out a financial plan.  I still have the voices of my heart and body to listen gently to as they lament being untouched and alone, my "inner goddess" and "subconscious" if you have read the book.  I still have to find the focus to clean and cook, read and play, and breathe. 

I think I need to plan and strategically organize how to handle certain pieces and events and interactions.  This faraway friend who let me hold his hand and cry talked calmly, laying out the paths and consequences I could describe.  He talked about taking emotion out of it.  Perhaps for me that means finding a safe place for the emotion.  To comfort and quiet it while the other parts of me take over, not to be taken out.  Sometimes it's too much to remove, so just distract?  Regardless, I can see partly down those paths.  I believe practice might help guide me farther.

And I will let some parts sleep.  I need to find more electricians, read up on the different wires and conductivity involved in electric repairs.  I need to refocus on what I already have inside me.  I may not do any of this "right", by anyone's rules, I may take too much emotion out, or leave too much in, I may want the wrong things, the wrong people, all at the wrong times.  But I will get through this.  My family and I will get through this.  Every single day I will be sure John knows I love him.  I will breathe before I speak to my kids.  I will hug more often than yell.  I will try to remember that my inner goddess has needs and desires too, regardless of what other chaos exists in the world around me and that this is NOT something to feel embarrassed or guilty about.  Like the panic, terror, exhaustion, mind-tearing sorrow, and fury it is a part of me and a part of this experience.  Compassion for myself is just as important as compassion for others. 

and breathe...

Body strength

Interesting side effect of getting my tattoo?  At least for now, there is a calmness in me that has been missing for a while.  A quiet strength.  So the box of wine I got the other day remains unopened and contentedly ignored.  Nothing is easier- John woke up in the middle of the night last night throwing up.  It wasn't the bug Aiden has been down with either, because he does not have a fever- it was  chemo sick.  So I went downstairs and got his antinausea meds, took the trash can liner outside, and lay down to try and rest till the kids started filtering in.

It is hard to believe how much love I am surrounded by sometimes.  Especially since we don't talk much about my issues at school.  Not that I want to, I do not!  Most of the time.  But that is where I am most of the time, and I often feel adrift and disconnected.  I suppose those are mostly coming from inside me and from feelings of insecurity and  loss related to other places and times in my life.  Todaya, some of the lovely ladies from UUCF will bring by the quilts they made for us from John's t-shirts.  That is a venture which John has been dreaming about since I first realized what a CRAZY amount of t-shirts he had, back in 2003...I am so excited to see them!!

It is interesting, too, how people reacted to my last blog.  It is as if each entry becomes the only thing I am, and all I will ever be to some people.  I suppose most of them don't know, realize, or remember all that I have already lived through.  I am not one to toot my own horn, but I have been fighting since I was about 15 to figure out how to get through hard things without becoming hard myself.  Or at least without becoming only hard, too hard.  Which meant that I would be open to all the lovely, sweet things, too.  Unlike my grandmother, who had found a way to live through some horrible things, but was awkward and uncomfortable with hugs, saying "I love you", and showing kindness to her family in general.  That also means I chose, for some of my defenses, the more painful route.  I chose not to build walls, but to forge through the fire.

I was talking with Gordan as he was doing my tattoo.  He and Kelly have a business, I think  he said, that centers on the way that pushing your body to and through extremes can bring a person peace, enlightenment, solace...his examples were about shaman walking over hot coals, dancing for incredibly extended hours up to, into, and beyond exhaustion...I don't claim to be a shaman, or to even be searching for shamanic wisdom.  It just felt right.  It felt good, and solid, painful and powerful all at once.  I found this article that spoke to my heart and will show those of you who think my choice to get a tattoo was childish and immature that no, it was healing, positive, empowering, painful in a way that imparted peace...

http://m.voices.yahoo.com/memorial-tattoos-help-grieving-process-1392179.html

Everyone's journey through grief is different.  Remember, you shouldn't judge what helps a person heal.  You can express love, support, concern...if you want to help your friend, open your heart and mind.  I have started my grieving journey while my husband is still here.  I don't know if that is good or bad, but it is what it is.  Some days will be angry, some sad, some lost, some strong.  But I know I am on a journey and that it won't be done for a long time.  I also know that I trust myself to reach out to all those amazing people who have shown the truly care when I need it.  I know I am stronger than even I have ever known.  I know I will fight to have the right to feel each and every step of this because that is to only way to come out the other side willing and able to love again.  I watched my mother and grandmother spend solitary lives.  Neither lost a husband to death, but they lost them nonetheless.  And they never dated again.  They never tried to find love.  John has already given me his permission to not live their lives...I made sure to ask because I love him so much, I needed to hear  from his own mouth that he didn't want that for me.  But no matter what path I choose or who I end up loving later, they have to know that John was my first true and real love.  He is the father of  my babies, and no matter how much I might love whoever comes next, they will not replace him- not for my nor for our children.  If this imaginary he who exists in the future expects to get close, he will respect and love me for that dedication.  I believe our hearts are capable of great love, and that there is more  than one true love for us out there.  I also know how hard it can be to try to find that love, which is what scares me.  Do not, however, assume my fear and pain are signs of weakness.  That would be a mistake.

For me, anyway, ignore the pain, block the light

silence, wine, or anger

I haven't been writing because I haven't been dealing so well.  I walk around and do my teaching job okay, somewhat functioning on auto-pilot, guided by the fact that I take the responsibility of caring for the babies of 25 different families very seriously...but at home, my rope is so frayed I don't even know how to hold on, let alone prevent unravelling in anything like a healthy way.  So I have been drinking a lot.  And because I come from a family of alcoholics, that makes me incredibly self conscious, so I keep making sure that, now and then, I take nights off.  Like tonight.  I had a rough day at school, a lovely evening with Cilly at her last dance class, and had no faculties left AT ALL to deal with her whining and crying for me with her little "I miss you!" blah blah stuff...nothing I do is good enough.

How do I smooth the edges of this incredible pain without alcohol?  Without a silence that keeps me up at night and numbness that drinks the oceans of tears I know are swimming just below the surface?  I want to cuddle my husband, not give him shots in the belly and a urinal so he doesn't have to worry about falling on the way to the bathroom in the middle of the night.  I want to remember what it feels like to not have a complete and Hyde-like meltdown when my kids push my buttons and just lose my temper at a more human-like level...

I eat too much, drink too much, skip brushing my teeth...as controlled ways to cause myself harm.  I can't explain why though.  And I don't know how to stop myself, because those things also give me a form of comfort.  Well, maybe not the teeth thing.  But that does get me in bed moments sooner than otherwise, like that really matters...

I guess I just wish there were answers.  Safety.  That I could feel what hope was like.  That I could turn off my brain, or at least switch the channel...I love my kids and I hate my life.  I hate what is happening.  I am trying to not judge myself as I do my best, even when that means I am raging in irrational anger at my 4 year old telling her with clenched teeth that "I.  JUST.  NEED. SOME.  TIME.  TO. RELAX!!"  That I could find a way to believe I would know what it is to be loved again. Not that I don't think John loves me...I do.  He just has a hard time doing so much right now, that even hugging and kissing is awkward, hard, nonexistent.  And I wish I could talk more or just find the strength to shut the hell up.  I get quickly tired of hearing myself complain, not that I don't have things to complain about; be terrified of; worry about...

So tonight, it might have helped to have a couple glasses of wine.  But this evening is dry.  To make sure I can.  To make sure I will. To find ways to hear my own pain, to find strategies for handling the inconsolable rage that wells up in me before it takes over....maybe Thursday, after I get my tattoo of John's idea, with his initials hidden inside, on my left hip so he will always be by my side.  I will drink to that.

some hard stuff

disclaimer for my husband:  please, if you read this, please please know that my greatest wish is that you were back to yourself, cancer free, and ready to live to a ripe old age- ear hair, poor hearing, and all, hugging all over and making inappropriate gestures and lewd jokes.  Don't think for even a tiny fraction of a moment that I feel otherwise!

To the hard stuff....I am really struggling with watching him struggle.  I read so many little things here and there about how people have faith, stay positive, hopeful...ready to say they will NOT be taken.  I think we have lived there for two years quite well.  I just don't know that we can continue to maintain that line of thought.  Or at least I don't know if I can.

Now, I think that if he "beats it", what does that even mean?  Will he be like this forever?  Barely able to walk or dress himself?  Sleeping most of the time, struggling with the anger created by not being able to help with anything?  That sucks.

I feel like I want to pickle my brain so that I can't think about it.  But that doesn't help him or the kids.  But I don't feel strong enough to let myself cry in front of the kids right now.  I have before and I will again, but I just feel like if I let myself go there and start, then stopping is going to be too big an effort.

I am having strong moments- telling Cilly to cry with her face in the pillow and not giving in to her tears to get what she wanted.  I did let her come in once she had stopped crying, but she had to sleep on the floor by my bed.  And I kept my tone loving which was SOOOO hard!  I am getting better, in moments, with moderating my tone in general.  Which helps.  Like when your dog is chewing something you do not want them to chew, you don't yell a them- instead you tell them what a good dog they are and call them to you.  Works way better than chasing...

and the hard stuff again?  I don't know what to wish for, for him or for me.  I want him well and whole and himself.  I want to be a team again, to remember what it feels like to be more or less happy.  But if I can't wish or pray him well, then what?  What do I wish or pray for?  I don't even want to type any of the alternatives.  Forget thinking about them.

Suffice it to say, how the hell am I supposed to live, love, function, hope, play, laugh, grow, be anything even close to whole after I lose him??  How???

compassion, love, forgiveness

I eat well during the day.  Then I get home and work on getting fat on crackers and wine.  Or I do yoga and wake  up to sweet and thoughtful babies.  I smiled a lot today.  It was so nice-although a little awkward and odd...

I just find my life so damn surreal right now.  John dreams of an adventure across the country.  I dream of finding a home.  Aiden is always mad at me.  I tapped with him tonight.  That helped him some, but then I was putting him to bed, he went to kiss me, and was too playful I guess and banged into my nose.  All I did was say "ow"  and before I could even be goofy about it, he had thrown his blankets over his head and wouldn't stop yelling about how he was sorry and I was mad at him.  There was nothing I could do to help him understand I wasn't mad.  I think he just needs to be angry, upset, afraid at and with something that he knows will always be there.

I don't feel like I asked for, dreamed for, hoped for, too much.  I most definitely have been blessed to receive, in many ways, so much more than I could have imagined. I think of all the stories that have crossed my path in the two years since John's diagnosis:  an 18 month of bundle of cuteness in little boy pants, suddenly and inexplicably bleeding out in front of his family; so many loving attempts to have a child that ended in heart breaking loss and emptiness; a child defiant, nasty, demanding, needy, destructive and hurtful whose mother read libraries of books to learn how to support her, even after her husband up and left her;  so many mothers who lost their own fathers too soon; so many awful stories of cancer and her devil minions...I don't think we should even use the word "fair".  It pulls at something in the center of me that feels like it could be my soul.  It  makes little tears and cuts.

I miss being the one who smiled almost relentlessly. I will do everything in my power to keep that part of me alive, because my babies will love that part of me best;  because that part of me is my favorite.

I will try to find a way to fight to focus on:
compassion
love
forgiveness

for me, for my kids,

in the hopes that I will always chooses the strongest path toward life, even when I am covered in anger, tap dancing with death in ways that make too-deep connections,if not invitations to enter the fray...

a hundred years of hugs

Sort of like "to be or not to be", but different.  It is just frustrating that the kindest, most sincere gesture, as well as the most generic statement screaming from the magazine cover, all speak to some simple answer or understanding of pain and grief, happiness and stress.  "Easy guide to daily happiness"!!  Excuse my french, but bullsh*t.  "Follow these three steps to daily bliss"...as if it were a simple thing.  The entire "religion" of Buddhism focuses on simplicity- yet when you play with learning about meditation and understanding what is behind that state of bliss, you learn about Monkey-Mind and how strongly it tries to delve into every effort to relax.  You learn about simplicity as you strive to accept that everything is impermanent, not easy.

Take your regular stresses, that are NO little thing believe you me I understand how that can be:  kids driving you nuts arguing over everything, dogs pooping in the house no matter how many times they went outside, a boss who makes you feel incompetent, unnecessary, maybe even idiotic...friends and relationships breaking down for reasons that make no sense and are full of lies, covered in fear and disrespect.

Now, add the thought of your best friend and partner dying.  Your story that was yet to be written got scribbled on like the bill you left on the kitchen table and your two year old found...after finding the big black sharpie pen.  Then the cats peed on it and knocked it on the floor, where the dog threw up on it...And everyone seems to have ideas of how to help.  I want to tell them how much I appreciate their efforts, and simultaneously feel guilty and ashamed that I just don't believe that "god" has a plan and that their dad will, necessarily, go to a "better place".  What place is better than here with us??
    

                                  

Besides, I believe we are energy that is bound to the earth, part of the earth.  It isn't new and it never goes away.  It just gets mixed together in a multitude of ways to make a myriad of different people and creatures and things.  And when we die, our energy goes back into the bowl of ingredients to get reformed, reconstituted, remixed and reborn.  Or remade.  But it remains.

And damnit, there is NOT an easy fix for happiness for this one.  I know that I can focus on the time we have had - the unexpected years without deficits, the way he has been here twice as long as the median GBM survivor.  I DON'T CARE.  I don't think those things are enough.  I know they aren't.

But I have to go to work because it is up to me to support the family.  I send our babies off to teachers that I hope are able to understand...that I hope don't have too many other imminent issues in the classroom so that my kids' needs have to be pushed back while the in-your-face issues are dealt with.

I hate cancer.  And please don't judge me but I hate the idea of heaven.  I hate easy answers and believing that "god has a plan" because I don't plan but there was a story I had a general outline of and that has still been screwed with, even as amorphous as it was.  And it isn't fair.  And it doesn't matter.  Because babies die, mommies and daddies die.  And we spend so much time in Western Culture trying to deny and ignore the fact that Eastern Cultures seem to build their understanding around:  we are impermanent; we are imperfect, and that is all part of what makes us and all things we love so delicately beautiful.  As the Little Prince says, "that which is essential, is invisible to the eye".

 I just wish what was so essential to me could have been visible for a bit longer.  Or that I could better embrace and find strength, rather than bitterness, in the idea that only disembodied love that swirls through coloring and warming the universe, is eternal. 

I guess I just wish I could hug him for a hundred more years. 

steam rolled and trying to dance

Squashed flat, beaten black and blue.  That's what it feels like.  And looking through some horrible twisted lens.  Why did I have to have a conversation with my kids about their dad dying??  About him not being there for all the things he wants to see.  Aiden asked question after question, he wanted to know what we asked the doctors, if he kept fighting if he could live forever...Cilly cried until she fell asleep in my arms.  There are no words good enough.  Maybe there are hugs enough.  But we won't hit that number of hugs for a long long time. 

John was amazing.  He has much to be proud of.  We want to make voice quilts with him telling stories to, about, and with the kids.  I think that will be a nice way to keep him close.  And we want to get cremains jewelry.  That's what it is called: cremains.  Sounds ridiculous to me but, whatever.

And tonight I put them to bed, tomorrow I go to work.  Cilly has dance class.  Hopefully she will not run another 103.8 fever like she did last night.  That was rough.  Rough is the status quo, though. 

I did not tell the kids that this is happening for a reason.  However, I did tell them that we need to honor dad by making there be a reason.  We need to find a way to make this awful, sad, scary thing something that brings us together and makes us better people. 

That is all I have the strength for now.  I wish I could fix this.  I wish I could make it go away, but not if that meant losing John.  I wouldn't change my relationship with him for anything, not even for the pain this part of our journey will bring;  has already brought. 

“You will lose someone you can’t live without,and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.”
― Anne Lamott