In My Heart

you live in my heart
my heart that beats 86,400 times a day
and with each beat of my heart
the resonance of your memory pulses
pulses through me to share love
to touch other's hearts
so they too can feel your love that is still alive
I hear you in the wind
I feel you in the rain
I see you in the clouds and in the stars
you are with me in every breath
nmk

Panic

when dread of the unknown gets a grip and panic washes over:
scared
stomach tightens
whole body tenses
anxiety heightens
breathing shallow
difficult to take a deep breath
start to panic
breathing faster
can’t get out of my skin
no escaping
thoughts of doom and shame
all sense of self-esteem
and confidence shrinking and withering
finally catch one deeper breath
trying to slow my mind
another deeper breath
the panic wave starts to recede
body is beginning to release its rigor
sleep beckons
nmk

I need to talk about the cooking class. It seemed like such a simple thing to do, register for a cooking class. Ten minutes away in a nearby town, it was closeby and convenient. I registered about ten days ahead of time, put it in my phone calendar, and let it slip into my unconscious mind.

I kept reminding my self during the day on Thursday so I would not forget, because on some level, I had an inkling that going to this event has some sort of significance, but I was ignoring all of it. I did not want to sabotage myself, even though I didn’t know what I would be sabotaging.

I made sure I got there in plenty of time. Even though the instructions said that you could not come into the house early (yes, it was located in the instructor’s home), because they were doing prep work up until the last few minutes of the start of the class.

So, I arrived early, and as I turned the last corner to the location, I heard something under my car. It sounded like a branch of a tree got stuck under the car as I turned the corner. So I tried backing up and then went forward again to see if I could dislodge it, but it still made noise. I got out to look underneath.

It was a branch that had lodged itself vertically just between the right front wheel well and the body of the car. I had to get on my knees, reach underneath, and try to pull it out. It was not very thin, about a half inch in diameter, and required some force to try pulling it down to get it out, but it was long and reached the ground and so there wasn’t any room to pull it down since it was touching the ground already..

All sorts of waves of foreboding are starting to creep in to my mind, along with “geez, you can’t even get here without something going wrong...loser”. I was doing my best to quiet that voice.

I figured if I broke the stick or branch, I would then be able to dislodge it. So that is what I did. In the process, I pinched the web space between my thumb and index finger making one of those blood clot spots, which happens when you pinch your skin. But, I got the stick out, or most of it anyway, so it wasn’t scraping on the ground anymore.

I got back in my car, brushed off my pants, cleaned off my hands and blotted the spot on my hand that got pinched. The negative voice in my head was chuckling, but the positive voice was saying good job.

I still had a good ten minutes to wait, so I sat in the car and listened to music, and closed my eyes and tried to relax. I tried to quiet the negative voice, so far I was doing okay, trying to breathe and not think, just float in meditation.

A little earlier, before driving here I was asking myself, do I look okay, how are my clothes, my hair, my breath…I flossed and rinsed with toothpaste. Oh, my god, remind me why I am going to this, and why am I worried about my appearance? Oh, I am actually going out to be with people, strangers, not a grief support group. Real people...lol, like my grief support is not real people.

Okay, they are real, but they are a narrow, specific, subgroup of people, all in a similar situation. I am going out into the fire of the general population. Completely unknown. Oh shit. That’s what my brain started to do. That’s why I was trying not to think about this the last ten days.

Some part of my brain was protecting me. I had to thank myself for waiting until now to start this anxiety, or else I would have cancelled or forgot about it until it was half over and sabotaged it in some way.

Let's get real. I have not had to socialize like this since before I met my wife Emilee. That was eighteen years ago. But here I was, trying to breathe and keep the terror at bay, and focus on the one reason I was here tonight.

Okay, more than one, but one was a good place, no, an excellent place to start. I was here to have fun. First and foremost, I was here to have fun. Not to meet anyone, not to meet a woman, not for any reason other than to get out, interact, and have fun. Back up, just to have fun. If I start thinking interaction, that crazy, negative, anxious, afraid voice is going to start.

So, I got out of the car and walked to the door and rang the bell. One of the assistants, Jamie, came to the door after a minute and said they were still preparing and would let me (us) know when we could come in, and that they should be about five more minutes.

Okay, so, I sat down on the steps and waited, thinking that I was beginning to feel awkward already. But, within a minute or so, several other people came up the broken bluestone walkway, and I told them they weren’t ready for us yet inside. There was some friendly chatter, and for the moment I stopped feeling so awkward.

Then it was time to go inside. So we filed in, were told where to lay bags or jackets, and where the bathroom was located, and that we should all wash our hands at the pantry sink, where there was also water or sparkling citrus seltzer if anyone was thirsty, and where the cooking aprons were. We gathered around the large island, were asked to sign the sign-in book, and then our instructor, Heidi, began.

She said she had a very eventful, hectic day, not the least of which was that the catfish that they had purchased, just didn’t look or smell right to them, and so she had to go get a substitute fish, tilapia.

The method of cooking would be the same, so you could apply this recipe to quite a variety of fish. Which is what I had thought when I signed up. I don’t really like catfish, or didn’t think I did, but I figured I could apply the recipe to other kinds of fish. So just sign up for the class. I did. I was here.

Heidi wanted to start by having each of us state our name, where we lived, what we did for work or not, our leanings towards cooking or not, types of food we liked, and anything else significant related to food, or why we came tonight. I was trying to stay focused on what each person was saying, and not think about what I was going to say. Just let it happen. Stop rehearsing. Be spontaneous. Oh shit…lol...here we go. My turn.

Name and town I live in, that was easy. I have been through all sorts of diets. Vegan, vegetarian, currently still don’t eat red meat, but eat poultry and fish. Why am I here? Well my wife, Emilee, of 16 years, wouldn’t really let me in the kitchen when she was cooking. To help clean up, but rarely to help cook.

And then Heidi said something about that, and I said something about not making too much fun at Emilee’s expense because she passed away a few months ago, and I started to lose it, looking out at Heidi from tears in my eyes, working on keeping myself together to continue talking, hoping the tears didn’t start dripping down my face.

See, this is what I meant about being out with the general public, real people, not just people who are grieving. Yes, but isn’t it just a little refreshing to hear all this diversity of peoples’ lives? You go, you positive voice you. Keep going. We (and it feels like a “we”, not just a “me”, a “we”, with all those voices in my head) are hanging in there.

I finished speaking, and the woman next to me touched me on the arm, and I felt accepted. Oh, my god, I felt accepted. This awkward, socially isolated person, me, felt accepted and included in the group. WOW, another baby step and another positive.

And it got better. Heidi said we could participate as much or as little as we wanted, and before I knew it, someone passed me the butter and asked me to measure six tablespoons, and I was getting my hands dirty.

I think I said something about multitasking in the kitchen and how my brain likes to do one task at a time, and we were working on three different recipes, starting off with the ingredients for one of them, but also doing some prep for the second.

There was friendly conversation, and attending to the tasks at hand, and it was becoming a shared project with different people and different personalities, and we were helping each other, and giving each other encouragement, and after a while I was just being myself.

Throwing out puns…okay the assistant, Jamie, she started it. She told about all the thyme puns. So I chimed in with four or five that came to mind, and I was starting to feel more at ease, less self-conscious about worrying if I was the awkward nerd, and just beginning to enjoy the moment. Huge.

That was just sooooo huge. I was being an interesting, involved, accepted person, not an unemployed, grieving widower. I was breathing. And the air smelled of spices, and cooking food, and life.

I was just involved in the moment and no longer concerned about HOW I was doing. No major mistakes were made in the cooking, we finally got to sit and eat after about two to two and a half hours. I even did okay with the level of spice in the food.

I tend to not eat any spice, and the chowder had just a touch of heat, and the fried tilapia had a little more (a light coating of tabasco before getting breaded), but with a little forehead and top of my head sweating, it was all good.

I walked out, conversing with a gentleman who said things will change with time, and I just politely shook my head and said I know, and thank you, and when I got to my car, I gave myself a very proud “atta boy”. I really felt myself complimenting myself, and no negatives.

I heard the negative voice ever so softly say, oh, but I didn’t meet anyone. And the positive voice countered with, I came to have fun, and have fun and be myself is what I did. It may not sound like much to someone not in the process of grieving, but for me it was such a confidence booster.

I did it. I made it through a real, authentic social situation, with total strangers, and I not only survived, but I had fun. I enjoyed just being around other people, hearing their stories, what jobs they have, a little slice of their lives, different personalities, different ages from early twenties, to early seventies.

I did not make a fool of myself, I was not a failure, and I managed to keep my negative voice pretty quiet for the most part. I know it is there because at one time, when I was twelve, it was protecting me. And I can thank it for keeping me safe when I needed it. But I like the volume on the positive voice.

When my dad suddenly died when I was twelve, I think a part of me unconsciously decided that since life was so unpredictable and so uncontrollable, in other words, I had no control over what happened……..that I started to act and behave as if it didn’t matter what I did. I am talking about in life. What kind of work, what did I want to do in life.

I think a part of me, like I said this was not conscious for the most part, a part of me felt no matter what I did, it wasn’t going to work out anyway, so whatever I would start, I would lose the passion, lose the drive to follow through and persevere. Because, deep, deep inside of me I felt it was all for nothing.

Instead of thinking, okay, I could die tomorrow but I want to live with all I have got for today, use whatever talents I have and do something positive with them, make a difference in other people’s hearts, touch them (yeah, cliché, reach out and touch someone), instead of that positive voice, I embodied the cautious, scared, anxious voice of it doesn’t matter, so why feel passionate about anything?

Full of doubt and loss of my idol in my life, my dad, I allowed fear, indecision, and criticism of myself for even feeling that way, to influence my life choices and decisions. I never really wanted to deal with “adult” decisions, the heavy questions.

Now, this is all ironic. Because, as a child, I got so sick of my parents telling me what I could or couldn’t do, I couldn’t wait to grow up, literally, couldn’t wait until the day when I could decide that if I wanted to buy something, I could. I didn’t need someone else’s approval for anything, a toy, what food I ate, what I did with my day to day life.

And yet when I got to be an adult and had to make choices, I had trouble. Choices such as what college to go to, what major in college, what job after college or to go to graduate school or not and for what area of concentration, what job to take, to marry or not, and whom to marry, and to stay or get divorced, and to remarry or not, how to run my business(es), or not run my businesses, and how to make my second marriage work or not. For the most part, I would bury my head in the sand.

To this day, I still shy away from the adult responsibilities, and conflict. I still get this feeling of being overwhelmed, that it will all go away if I ignore it long enough. I am starting to realize it doesn’t go away. Unmade decisions linger and fester after a while.

They affect my life anyway, even when I decide to not decide. And then things are even more out of control and are fulfilling that unwritten, unconscious thought that life and everything is so unpredictable, so why bother deciding?

Of course, I have taken some of the three P’s from Martin Seligman, a psychologist. Personalization, pervasiveness, and permanence.

Personalization, or the belief that we are at fault, that I had something, somehow, to do with my father dying. It is different from responsibility, taking responsibility, which is a good thing. But personalization is learning the lesson that everything that happens to us happens because of us, because of something I did or did not do. Of course, this is not true. We just think it is.

I have allowed that traumatic event to take on pervasiveness, where it invades and touches ALL parts of my life. Everything, everything is in a state of decay or dying, everything is breaking down, everything will ultimately fail, including me. Pervasiveness is like a cancer. Let it stay long enough and it takes over everything.

I have let it take on permanence, thinking it will be that way forever. Sadness, grief, failing, not trying, all of it...will last forever. I am stuck like a hamster running the wheel in its cage. Wow, that is depressing.

Yet, Emilee’s dying has opened me up again, with an opportunity to step off the wheel, to venture outside the cage, to look at how I processed grief when a child, and how I can learn something different now.

I wish someone could have taught me this when I was younger. Especially after my dad died. I had a therapist when I was in graduate school for, of course, what else, counseling. I made some progress with him, and years later he was helpful in encouraging me to go back to school for my physical therapy degree.

But, I managed to not really do all I could with that as well, and let things fall by the wayside. But, the positive voice is telling me that was a significant accomplishment, even if I could have done more.

I have work to do still. Maybe the work is really just beginning. But I am willing to embrace, dialogue with and challenge the negative voice that still believes it is helping, like it did when I was twelve years old.

There are days when I feel overwhelmed, but I am confident that those feelings will pass and I will feel the energy of being more positive, that I will act in spite of feeling afraid and paralyzed by having to make decisions.

I can tone down the voice of being afraid that says I will make the “wrong” decision, so don’t make any decision. I can instead, listen to the positive voice saying make an informed decision, do the best you can. If you make a mistake, it is okay, learn from it.

I am, in short and long, a work in progress. A living, breathing, struggling, work in progress.
Anyone else out there have voices in THEIR head??

I never know where the words will take me

I wrote this for this website, and it metamorphasized as I was writing:

So here is my conclusion. No one reads what I write and post here. Well, either no one reads any of what I have written, or no one ever leaves a comment.

I am leaning towards the first conclusion, because if people ARE reading and do not leave any type of comment, that is sort of rude. So although it sounds paradoxical, I hope it is that no one is reading these posts.

Okay, now that we got that out of the way…..the question remains…..why is no one reading any of this?
Anybody? Someone give me a clue. Of course, of course, I am not expecting an answer because I am only talking to myself here.

I never have any interaction on this site unless I initiate contact. Maybe it is the design of this blog site. I share posts on the Blog For A Cure website and frequently interact with others there. On this site, I don’t think anyone gets alerted that someone has a new journal post.

Oh well, it has been nice talking. I am used to talking to myself these days. When my wife WAS alive, she would often tell me I talked more to myself than I did to her. So I am used to talking to myself.

There is a problem with that, however. I need interaction. My own voice just bouncing off the walls gets monotonous. I need to hear other voices. I need some other perspectives. Even my wife would make comments from time to time. Even if it was to tell me to stop thinking out loud.

I am lonely. Not all the time, but ….the sound of the clocks on the wall gets louder at night. The oil burner and the heat make more noise than I ever realized. The walls and the roof creak on occasion.

Sometimes I think I am smelling things like food, or smoke from a cigarette, the scent of hand cream, something cooking, potpourri (yes, there is some of that around). The olfactory halucinations come and go. Sometimes I like the sounds of the house. Other times I want to hear music, actual melodic music instead of the house talking to me.

I have successfully written a page about… loneliness and quiet. And no answers to these writings. And sadness, and joy. Oh, you didn’t pick up on the joy part yet, huh? You have to listen with that third ear. It is akin to the third eye in meditation.

The third ear helps you to listen BETWEEN the lines…and hear what may not be spoken.
Of course, sometimes there is only silence there. But, other times it may be soft, it may be subtle, it may be obvious or barely perceptible, almost imperceptible. How do you hear joy?

I am not sure. I don’t know it well enough to teach someone else how to hear it yet. I am learning. I am learning how to hear it for myself. How to feel it, how to see it and take it in, absorb it, let it ignite my cells. How to embrace the sensation in my body. I am more used to suffering.

You know, the aches of painful past memories, those I am conscious of and those that are below my conscious radar. Some are just below, some are further below, some are buried deep and require serious patience and inquiry as to why they are still there.

What are they doing there? How did they get stuck there, and since they are probably doing something that had a survival function at some point which is no longer serving the original purpose, how do I embrace it and allow it to shift?
Time for a nice deep breath, several actually.

Can I just be present with those inner beings, (usually it is a child from 3 or 4 or 5 yrs old to a teen or young adult, but more often than not it is a young child because young children are more easily damaged or traumatized), and accept them and start a dialogue with them?

That is what I am practicing. Next week I hope I will gain some valuable guidance, that of a therapist who understands the language of communicating with those long untouched inner places. So, in theory, if I embrace those inner children, there is a shift, a transformation of some sort, and a cultivation of joy.

What a nice phrase, a cultivation of joy. A cultivation of joy. A cultivation of joy. Conjures up an image of gorgeously rich earth being mixed up and aerated and prepared for something delicious to be grown. I can smell that earthy, aromatic flavor. I breathe in and feel the joy of my breath, I breathe out and let the tension float away.

Tuesday March 28, 2017 Cancer World…The Corridor at Smilow

You know, something I have been meaning to write about was how I feel sometimes when I am walking through Smilow Cancer Hospital, especially on the fourth floor corridor from the Air Rights parking garage to the Smilow elevators. I have talked about the artwork on this corridor previously, but I want to address something else.

You have to walk down this long corridor and of necessity, you pass by different people. You pass by surgeons and various types of doctors and nursing staff (I thought I saw some knowledge floating by), custodial staff, patients, families of patients, caregivers pushing patients in wheelchairs, the whole spectrum.

What I feel like sometimes, is that I have just walked into another world. I have. It is different from the outside world because most of the people you see in this place have been touched by cancer. It is a whole world of cancer related signs and symbols.

Sometimes it just makes my stomach twist around. I see patients that are obviously going through treatment. Some are obvious, some are subtle.

It could be the hair, the gaunt look, the eyes, the walk, the sense of how the person is carrying themselves, or the look of the person being wheeled, sometimes you see a smile, but more often you do not see many happy faces. You see a lot of anguish, and fatigue. And, there are bubbles of hope, too.

I think of the orchestra that is around me. The scales of emotions, up and down. The range of anguish that is floating by, the sea of pharmaceuticals that is swirling in little eddies and whirlpools. There is also the breeze of competency and knowledge in the various practitioners.

Sometimes I hear harmony of some sort, but more often than not I hear a type of discord. A clash of knowledge and treatment rubbing up against human flesh, and the clashing is causing a cloying screech akin to a nail on a blackboard.

Sometimes I just hear a hum of the machine going on and on and on. I see moving through the air a sea of diagnoses, treatment regimens, a panoply of side effects and agony and people dying and also hope and sometimes success and healing and cures and NED’s (no evidence of further disease, ie, remission or cure or hopefully cured).

I also see business, and dollar signs tossed onto peoples clothes, stuck to their heads and shoulders, some collected or grouped at the check-in areas for the various clinics. A mirage of dollars floating this way and that way in a map of creeks, streams, rivers, and finally the sea.

Most of the dollars are leaking out of the patients and into the hospital, and from the hospital to the pharmaceutical companies. That flow is more like a river, like all the trinkling, trickling, tributaries are joining together to form a swift current.

I see an orchestra, a mass of people, an enormous industry, a huge symphony of emotion, and of profit. And I wonder what would happen if so many less people were suffering. What would happen if the treatments were suddenly exponentially more effective?

What then? What would happen to this massive industry that anyone with any type of cancer, is a part of? What if, all of a sudden, there was a magic bullet that blitzkrieged cancer to kingdom come. What would happen to this whole infrastructure devoted to cancer care? I certainly don’t know the answer.

But I have thought about the question…. As I am walking down the corridor, listening to this symphony (or cacophony, which is probably a more accurate term). I am marveling at the intricacies of the many gears in this machine and how they connect and intertwine with each affecting a multitude of others.

Most of the time this sea of people makes me feel sad. I am sad that sooooo many people are affected by cancer. I am sad that this is such a big business.

Yes, I am glad that so many people are being helped and are living longer than they used to. Yes, I wonder about the quality of life for many of these people, but I am moved by the mass of human spirits that will do almost anything to have more time on this earth.

For many, it is quality time. For most, it is this, or death. And for many, it is this,…and death. And, yes, I know we all die one way or another, and cancer is just one of the more despicable ways.

But, whatever it is, when I am walking down the corridor, it is a sea of movement, an ocean of diversity, an awe and anguish filled world that continues to amaze me and haunt me.

So, here is the thing about cancer. You know that question on the profile, the one that asks what do you most dislike about cancer?

Here is my thought for the day. It came to me while watching the movie Pete’s Dragon. I am a sucker for those kind of movies. And, these days, I just discovered, I need to watch them alone. ‘Cause I sob.

What I think cancer tries to do, is rob you of the magic in your life. It tries, and tries and tries. And there is not one person on this earth that can say that they don’t see some kind of magic in their lives.

Think about it. Your damn heart is like an electrical, mechanical pump that continues to beat, how many millions of beats? Anyone really know why it keeps going until that last moment that it stops?

Oh, you can get all technical about how the electrical signals pass from one spot to another and relay an electrical impulse and a rate for rhythm, and a strength of beat, and how ions switch and transfer and cause impulses to travel along axons and nerve pathways and cause muscles to contract, and on and on.

But can anyone really tell you why? Some think it is god. Some say it just is the way it is. I say it is magic. The same magic you believed in when you were a small child (as opposed to a big child, which some of us are). The same magic that is all around us.

Look at the clouds…..look at the colors in the sunrise and sunset. Look at the wind…feel it? Feel it blow through your hair, feel it caress your bald head, feel it whip through your clothes and take your body heat with it.

Look at the trees. Did you ever stop and just marvel at the tree shapes, the way the big branches divide into smaller and smaller and smaller designs? The clouds…ever look at the intense designs in the sky? The myriad of intricate brushstrokes strewn across the sky.

How about the way our bodies take in the food we eat, when our bodies are able to convert this chewed up mush into material that our cells can convert into energy….it is like we are able to create our own battery life to carry on cell function and can use this energy to move against gravity, air resistance, lift our bodies, lift our legs to walk and take steps, push and pull objects, get up from a chair, the floor.

What about the way the warm water in the shower transfers heat to your skin, the way the food cooks on the stove, the way the pond freezes from the top down leaving some air in the bottom water for the fish.

How about the way our body breaks apart the water we drink, and the sounds the water makes as it flows in a brook, creating little cascading waterfalls as the water flows downhill. The sounds of the birds, the colors that we see, the smells of the food, the flowers, the poop when you sit on the toilet…..yes, even the obnoxious smells and the irritating sounds…..all music of a sort.

And I won’t even get started on music, how it can move you, take you places, carry you away, soothe you, smooth you, funk you up, get you moving, get you relaxing, help you sleep, make you cry, make you laugh and sing and shout.

The magic is everywhere. So, what is it that cancer tries to do? I think it tries to rob us of the magic. It wears at you. It slowly erodes little bits of magic and eats away at many of the things that cause you to feel joy. It eats away at all the body functions that are magical and starts to cause them to malfunction.

It is like when the computer HAL in the movie 2001 A Space Odyssey started to malfunction and mess with the operating systems of the spaceship.

It affects all our basic functions, our skin, our mouth, throat, lungs, blood, digestion, elimination, bowels, organs, eating, breathing, our senses, our taste, our sense of smell, our hunger, all our drives, including our sensual, sexual pleasure. I am leaving out a myriad of areas, but it affects evvvvvvvverything.

It starts to rob us of our magic. We don’t feel so wondrous anymore. How do we grasp, claw, struggle and fight for our lives to cling to a shred of magic? That is, in itself, a remnant of the magic that is still left in us. The will to do whatever we need to do to sustain our life.

We cling to hope….we cling to our treatments to destroy the cancer, to diminish it, to give us more time to live and breathe and take in the miracle of a birth, a birthday, a holiday, a hug from a loved one, a touch, a kiss, a loving word, an understanding ear to listen to us rale, the bird chirping outside our window, the rainbow in the cloud, the sound of a loved one snoring….. all of it.

That’s what cancer tries to do. It tries to take our magic away. When you have no magic left, you are done. You are just existing. I don’t see this as a battle, because in a battle someone wins and someone loses. I want to change my framing so that I see it as each person carrying a torch of light, a torch of warmth, a torch of inspiration, a torch of magic.

You don’t die and lose the battle. You just pass on your torch to someone else. The magic, like matter, can neither be created nor destroyed. Cancer can’t take it from you. It is yours, until you pass it on to someone else. Your light, your magic, doesn’t go out, doesn’t diminish, does not become degraded or humiliated or demeaned in any way.

Cancer tries to kill you by smothering your magic. When you can no longer go on, cancer has not won or defeated you. You have NOT lost a battle. I think you have won.

Your magic lives on in every heart you have touched. When you die, the cancer dies. It does not go on. But your magic does. It goes on in me, and in every soul that has been touched by this despicable disease.