Thursday, May 24, 2012


I believe, or rather I want to believe.  I want to believe in the power of love.  I don’t want to lose John.  He isn’t perfect, but neither am I and we are both so willing to work with each others' screwiness!!  He is an amazing lover, but not the best kisser.  He is thoughtful and caring in so many small ways, but not very romantic. 
Life is pain and imperfection.  I need to try to figure out how to allow those to coexist with my desire to believe in love, in second and third chances, in hope and dreams….my mother got the house she wanted, across from the park with the huge yard.  And she was a wreck, miserable and lonely.  How do I know what to wish for?!?  I wished for more time home with my Neil because I hated that with each baby I had less time home, and now look at me.  I have tons of time with him, but that isn’t how I wanted it!!!!  Be careful what you wish for, is what runs in my head…but then I get so scared to wish.  That isn’t a good place to function from.  And I feel so lost and lonely.  I have friends, just not very many that I know how to reach out and talk to.  And I HATE cancer SO much, what it has done to countless people!  It is a sickness that has a presence and when it walks into your house, it doesn’t care what it wrecks.  It just does.  And no one tells it how much or how little to affect.  Your track record doesn’t matter.

I don’t know what I want.  I think about Jacqueline in these moments.  And a little about Mike.  I feel the unfairness try to tear apart my insides and I feel disconnected from everything.  I think about my job and how it feels like I was fired, albeit temporarily.  Fired for trying to be there to support the man who has shown me more love than I ever dreamed I could get.  And from whom I just ask for more and more.  Why can’t I…I need to chill with asking more of myself.

I want to lose weight, be strong, clean the house, keep my job, buy a home, reignite the passion John and I once had, relearn to write, remember to read, find a hobby, build friendships, develop hobbies… I don’t know how to do any one of those things on my own, with any consistency.  And I don’t know what to do with the thought that I need those things, but constantly seem to fail at them.

I think one of the things that hurts and confuses me the most, is that I don’t hear my voice very well anymore.  I used to hear my voice when I wrote in my journal, when I went out alone to drink and write and meet a guy.  I heard my voice when I went to classes alone and when I went to work…especially when that work was in front of kids.  I really got to pull the most fun parts out then…and now, they took that from me.  Anything I thought might be stable, sturdy, dependable, they took from me.  I have no support from family, not like people seem to define it. There is love there, real love, but for whatever reason or reasons, helping out either financially or with a presence just isn't in the cards...  I have random spots of cool, brilliant, amazing, loving friends, spread throughout the east coast, mostly, but across the U.S. .. what good does that do me when I am lonely and want someone to drink with, to dance with, to commiserate with me…

I am thirty-eight.  I am still trying to find myself.  What the hell does that mean?? And how do I find the strength to keep moving forward and stop whining?????????

someone to listen

It isn’t about the mess.  It’s not about what you get or how much you have.  It’s mostly about hearing your voice.  I guess at one point writing enabled me to hear my voice, canvassing enabled me to hear it, debate and discussion with friends enabled me to hear it too.  Then it was John.  It was also in front of my classes.  I got to be on stage for a little while; I was the one writing the script.  Now, I feel cut off, like I am floating.  Humans aren’t the strongest or fastest, or even the smartest species.  But we have a capacity for heroism, for compassion and love that other species don’t seem to show.  I remember times in my life when I had a listener, an audience to hear what I was saying and connect to me.  I even remember inspiring and reaching some people.  So the question seems to be, how do I find a way to reconnect to myself?  How do I define my own self-worth when there is so much I don’t understand, so much I have no control over?  I only have control of myself and the way that I perceive the world, my own actions create my personal story, my own world.  When I have to interact with others who have power over my position in the world, I give the microphone to them.  I become the invisible princess with a frog in her throat. 
When I remember all my paths and battles, I am amazed at what I have done.  But in the day to day, keeping those medals and tales in the fore makes it so hard to see what is in front of you, to figure out how to juggle what you are being handed right now.  I guess it seems like I need to find a way to condense those treasures into something I can hold, see through.  For lack of a better choice, perhaps what I am looking for are some rose colored glasses. 
Perhaps what messes us up most in life, is our image of how things are supposed to be.  Even when we don’t even realize we have an image.  For one, it is brain cancer or a brain hemorrhage, for another it is heart failure, a car accident not wearing her seatbelt, more cancer, divorce, alcoholism, being told your mother didn’t make it because you wouldn’t pray.  Once you figure out there is no “normal”, there is no escaping the drama, that there is no control you have other than your own perceptions, then what?  Your perceptions are so easy to forget about.  It’s not like you wear a sign, backwards on your forehead, to read easily in ever mirror and window you pass.  How do you remind yourself that each day and each step is defined by how you choose to place your foot and the shape of your mouth as you move forward.  Plus, even when you know that is true, when you are in the middle of the storm but you know it could be worse, how do you talk about rainbows and sunshine?  I acknowledge the blessings we have, but I don’t know that I have the strength to focus on the positive.  It is as if I don’t want to give anyone the wrong impression so that they think I am okay.  Because I’m not, even though I know that I can get through this.  You can’t see the forest for the trees.  The journey is what gives you the strength, regardless of how much you lifted prior.  How do you do it?  How do you not?  Life moves forward every day whether you want it to or not.  You slog along with it, through it, and with each step you gain strength.  Carry the tiny piglet to the mountain top to drink from the stream every day, and a year later, you are strong enough to carry a full grown boar up the side of a mountain.  How important is it to acknowledge the strength you get from each step?  What if it hurts and you just want to bitch for a while?  Does that make you less strong, or gain less strength?  And breaks, can’t you take breaks for a while now and then?  You still have to finish the journey to the stream, and you still have to take the steps carrying the load. 
Part of this assumes purpose, though.  What purpose do we have?  I know I don’t believe the purpose is to have stuff.  I also know that joy of being there for someone in need, especially when there was no one else.  On the flip side, I know what it is like to be held up by the gentle caring of others.  My little girl told me for the first time ever the other day that she thinks I am the best mom in the world.  I remember feeling that way about my mother when I was young.  How full and warm and safe that felt.  What I know for sure is that we are all here, for some reason, for no reason, for whatever reason.  Here we are.  Nothing is forever.  Pain is inevitable as our human forms decay.  Each moment is what matters and the ways you can bring joy to those around you.  Those things last and those things spread.  The moments when you let someone else hold you in the light, and those moments when you hold someone else in the light.  That is all that matters.  I keep coming back to that.  The connections between each other, between ourselves and our world, and each living creature and species and person…the amount of energy on earth never changes, neither growing nor diminishing; it simply shifts form.   Loving the energy around you, imperfect though it is, is all that matters.  And yes, it seems to be so much harder when you butt heads with someone who just wants power and dominion over others, who wants to be right, and better than you and stronger than you and then prove it to you.  Because I know from canvassing that changing someone’s mind is really not the kind of thing you can usually do in a short period of time.  Like convincing an alcoholic that she has a problem, a person has to be ready to change, ready to understand that it is the job of each of us to be the good in the world, to believe there is good in the world.  The mess will be there tomorrow.  Your chance to comfort a soul, either someone else’s or your own, if even for a moment, may have passed.  Sometimes I don’t want to fall asleep because I am afraid of what tomorrow will bring.  To be heroic, one must have “recourse to boldness, daring, or extreme measures”.   So you take the option, the choice of or way out through daring, or extreme measures.  When we are strong through something we didn’t choose, when we turn and find we have come through the fire and are tougher, clearer, perhaps less vulnerable, what are we then?  Are we still heroic, even though we didn’t choose those extreme measures, but rather had then dropped in our laps?  I don’t think so…I think we are human.   But it is comforting to see it as tinted with heroism.  Even if it does start with something as small as closing your eyes to sleep knowing another day is on the flip side of your lids.

not my favorite pie

I hate this.  I want to be positive and strong and confident.  And I feel like I am, I just haven’t gotten to that layer yet.  I spent the day calling the Patient Advocate Foundation to get set up to find financial assistance for child care.  Then I called to get set up with an account for getting help with John’s prescription for Temodar.  I also called the Jack and Jill foundation to tell her that I want to take the family trip whenever, since they put me on leave anyway.  I found all our tax documents and tried to organize all our papers that were piled up in the kitchen.
I didn’t call about substituting and figuring out how that will work.  I don’t want to sub.  I just think about how ridiculously happy it made me to take Aiden to my school, where the people that knew him when he was in my belly could see him and help keep an eye out on him, where he wasn’t just another kid, but Mrs. Smith’s kid, the cool and crazy 5th grade teacher’s son.  I think about holding his hand and walking down the hall, seeing him in his classroom working, running into him in the hall and getting a huge hug.  That was the best feeling!  It felt so comforting and right.
I keep thinking about the Princess Bride and the Buddhist book of questions we have.  Life is pain.  The point is to embrace the pain, acknowledge it, let it brighten each positive moment.  Allow yourself to learn to find calm and comfort within the pain.  John talks about how we will see Cilly walk down the aisle together.  I don’t know that I believe that will happen.  I don’t know how to let myself believe that.  And I can’t say anything to the contrary to him because he MUST believe that in order to move forward. 
I don’t want to sub!  I want to not have been pulled from the only place I have ever stayed at so long!!  It wasn’t perfect, but what the hell is?? 
Life is tragedy, it is beauty inside loss, and comfort in emptiness.  I just don’t want to fight anymore.  I don’t know how to fight, how to not fight, how to choose which direction to point myself.  I feel so lost and alone.  I don’t know who I am or what the hell I am doing.  I am so damned tired, but I don’t want to sleep at night.  When I go to sleep, time just rushes forward, and I want time to stop doing that.
I try to think of my mother, of Nanna, and of Cecilia who I never met.  I want to be strong enough to honor them, but I don’t know which way to move.  I don’t know what to hope for, what to dream for, what to work for, what to say, what to believe…I want to be a good mom, and a good wife, and I want to take care of myself too.  I hate that this is happening and I just don’t know why or what to do!! 
I feel so damn sick.  I didn’t know I could be this scared, and still move forward even a little.  I wish I could still blog or do facebook.  It really helped to be able to share these things, and to hear from my friends.
I want to ask why this is happening, but I don’t believe that is a good question for anything anymore.  There isn’t a reason.  It just is.  It is for me to find out how to live with it and be the best person I can be.  No more questions right now, please.  Mom, I just want to rest.  I want to relax.  Why can’t I find a way to be happy with what I have?  I know I have a shit hand, but while I look around, really, who doesn’t?  It seems to be a matter of time, and a matter of who makes the best shit-pie.