Tag: inner growth

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Summer with Epilepsy

I love summer! I love the freedom, the vitamin D, the light, the change of scenery, and especially the pace. We swing full throttle between energy and placidness like a feather on a lake crest. We bounce between beaches, lakes, museums and play dates, to chilled out self-confinement in our beautiful home until we feel rested and recovered for more sun-filled jaunts. We read, we write, we study, we play, we connect to our bodies, we talk and laugh and live. In the summer we touch every part of living, especially the marks we miss during the year. The marks we miss because of epilepsy.

We’ve collected three years of data now, so I am confident summer bliss is not a fluke. With or without seizures, and let’s be honest we’re never without seizures, it’s the only time of the year we have moments of normal. Moments where Buddha doesn’t feel separate from his peers, moments of ease and flow. In the summer we are not harnessed to a schedule that perpetuates his disability. In the summer we are able to expand and live at whatever pace he needs and the only thing perpetuating is the light in his eyes.

We have bad days, we have wonky place episodes with aggression and hate, we have therapies and lessons. We have tutoring to help him keep up with the gains he worked so hard to make during the year.  And yes, we have schedules. Oh my, do we still live by schedules. We have schedules, timers, to do lists, and point charts for every step of the day. They are his anchor to the world, consistencies that allow him the confidence to expand and explore new sights, new thoughts, new feelings, and new experiences.

But even these bad days are better in the summer. They don’t spotlight the discrepancies in his growth to his peers. They don’t mark his slower progress. Instead, these days illuminate his progress. In the summer, his kindness, his strength of will and heart, and his ability to move through endless cruel fits of fate are bathed in a halo of sunshine that allows him to see how powerful and amazing he is. Summer is the glowing lens through which we see how stupid the idea of normal is. How unnecessary to his success.

If only that were true all of the time.

Fall will be here soon and he will have to once again begin the daily battle of trying to live everyone else’s version of normal. He will try to make it to school a few days a week. He will maybe, just maybe, have the energy and forward brain activity to allow for a sport or activity. He will begin to use his schedule not to mark the fun and progress but to count down the minutes until he can rest for the night after the mental exertion of the day.

In the summer Buddha gets to be Buddha. In the fall and winter and spring, Buddha is the kid with epilepsy.

I love the summer.

I love my little man.

I wish it could always be summer.

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“Should I Stay or Should I Go Now”…Love Part III

“Should I stay or should I go now?
Should I stay or should I go now?
If I go there will be trouble
And if I stay it will be double
So ya gotta let me know
Should I cool it or should I blow? ”
The Clash

A funny thing about living past my 20’s and 30’s is that I can’t help but notice trends in my coping style. I can’t help but gather data that paints a picture of who I’ve become. I suppose, on one hand, it’s another way of saying, “the choices you make define you.” But I think it’s more than that. In my 20’s, despite my best intentions and attempts at self-awareness, I thought I was breaking patterns. I thought I was defining myself. I did try, and that counts for something. I believe it was part of the process, and I’m not un-proud of who I am. It’s a boon for me that I love big and I love hard. It’s an emblem I am not ashamed of. But I spent much of my life loving and leaving fast and I see now how it’s led me here. I’m good. I’m where I am in the moment, and it’s OK. I guess I just wonder if I was meant to be or could have been someone or something else. If I could have been more. I wonder if there is still time.

Mostly I’m just surprised by how much I thought I was creating of myself when in fact I was simply responding to programming and becoming.

Despite my most deliberate efforts, I lived my defining years through a set of experiences I had very little choice in making. My childhood imprinted the belief that told me who I was so the choices I made were choices I was bound to make.

Should I stay or should I go was my subtext and I didn’t even know it. In a way, should I stay or should I go determined the course of my life. It certainly determined who and how I loved.

I wasn’t able to see how I had internalized my childhood life until after I had made choices based on it. It was only through reflection of that “lack of choice” that I was able to finally begin becoming the person I wanted to be. I suppose that too was a process in the making, and part and parcel of being a person, so it’s OK. I guess I just wish I hadn’t taken so long.

Nevertheless, here I am, not too much worse for the ware. I’m still standing. I haven’t given up. I’m happy. I’m not happy in the way I thought I would be in my twenties. But deep in my being, I know happiness because of what I’ve lived through. I know a new happiness because of the love of people who stood by me, including love I’m learning to give myself. I guess at the end of the day, that’s pretty impressive.

“No one’s gone till they’re gone”.
Fear the Walking Dead.

I find this idea of “becoming’ endlessly fascinating. And I always wonder how “being” applies to love.

I want to know, realize, and become everything I possibly can. I want to see, really see, who I am. I want to be the best version of myself. Mostly, though, I want to help guide my son’s childhood with as enlightened a hand as possible. I want to know I did my best to help him walk a path where he makes better choices in his defining years than perhaps I did. At least less desperate choices.

I live by gut and heart…and then the brain. I love my passion and my drive, I’m OK making my way through the heart first. That being said, I was smart enough to marry a computer developer and inventor who lives by data. Also, Buddha’s diagnosis has proven impossible to survive without data and logic So, luckily, I have also come to appreciate, if not love, data.

I can be taught.

This sentence, I love data, if you knew me when, is a complete juxtaposition of who I was or wanted to be many years ago. But there it is. Life and experience that lead to a choice where I am now an avid gawker of data. (Just for the record, I don’t have a spreadsheet or anything. I write I think, I reflect. Some systems just don’t need to change.)

With new wisdom, experience, love and forgiveness, fault and failure I use this data not only to understand myself but how I define love. Because to me, it all boils down to love. How I love myself determines how I love others. The better I love others the better I love myself. Round and round it goes until purpose, contribution, peace, and happiness all collide. At least that’s my theory.

I want love to be what defines me. Big love.

Collecting four decades of data on my personality, partner choices, jobs, achievements, and relationships I found some interesting trends. Trends that help me understand what love means to me and how to love better!

Here are my 10 most common trends based on this data.

1. I am loyal to a fault
2. I crave affection and soothing in atypical amounts. Meaning I need more than a lot of love to make up for love taken as a child.
3. Justice is subjective unless you’re cruel to others. Then your just an asshole.
4. I am an addict, therefore, until my 40’s, my life was seen in stark black and white.
5. I want to save the world from loneliness and unworthiness. I want to be saved from loneliness and unworthiness.
6. I believe in hard work and purpose. The search for the meaning of life.
7. I am a good leader, not a great employee.
8. I believe I am good enough for success but don’t really believe I deserve it.
9. I have judgment for people who have children that aren’t willing to become what they need you to be to raise them without loneliness and unworthiness.
10. Perfectionism is a blessing and a curse but not something I’m entirely willing to give up. It’s a mark of my coding.
11. If you hurt me, you are dead to me…forever. Without even a goodbye. You are erased.

And here lies the rub. Number 11: If you hurt me, you are dead to me…forever.

“Should I stay or should I go?” Most likely, I will go.

Not very enlightened.

My subconscious definition of love is equal to abandonment or enmeshment. So, I believe that if you love me, you will leave me or assimilate me. In attempts to hold my own boundaries, to be myself, I leave people as fast as I fall in love with them. At least I used to.

I am learning that’s it’s allowed, even right, to redefine love as we go along defining ourselves. I didn’t believe that as a child and think it’s why I’m happier now. I have given myself permission, more and more each year, to chose love that works for me rather than let love just happen to me.

If you hurt me enough, you will be dead to me. But if you keep trying to communicate, to understand me as I try to understand you, I won’t run anymore. I will stick it out.

Your path isn’t mine to decide. You have the choice. I don’t want to run. I don’t want to be a runner. I just want to know I’m worth more than tolerating abuse. I want a big love that’s real love.

I’m not entirely healed so if you love me, please don’t fuck with me. I will go and that will be that.

I want to choose to stay instead of go. I want to see who I can be, how much better I can love when I stay instead of go.

 

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I Love You…Me. Love Part II

I have known love, faked love, been confused by love, made love up, forced love, run from love, and controlled-well tried to control-love. I have watched love morph and seen love grow. I have watched it die. I have been hurt by love, been healed by love, discovered parts of myself through love, been stranded by love, driven to love and driven by love. I have been abandoned by love.

I have loved and been loved.

I have searched endlessly for love, for connection. And I have loved outwardly on every level in every way.

I do not love myself.

I know that my Odyssey, as cliche as it is, is the search for true love. My battles have been fought through attaching myself to outward love as a means to find inner acceptance; true, compassionate love for myself. And I have to, at least, recognize that I am a brave and valiant fighter, determined to succeed in creating love or die trying. But I do wonder if maybe I’ve been fighting the wrong battles, creating demons instead of following my heart. Have I been fighting myself as a means to love myself? Have I missed that love is grace and not earned through punishment, but granted by the miracle that we’re here at all?

Either way, I have Don Quixoted my way through life long enough. As romantic as it is, I’m tired. So, I think I may, for once, try the path of least resistance. It goes against my very being, but insanity, as they say, is repeating behavior and expecting a different result. I may be stubborn and have dabbled in crazy, but I like to think I’m not hopeless. I’d like to think I can be taught to try something new, not just try again.

I don’t know how I came up with this. It’s probably the percolation of therapy and experience, knowing I can survive rock bottom, and the stability my little family gives me even through trauma. Whatever the culminating cause, one day I tried something new and it’s helping.

I confess that in my grief and fear I can be….well, judgy. The latest example of this is the frustration, borderline rage, I feel navigating the city streets. I swear to God, people, PAY ATTENTION!! It’s not that hard. Walk on the right side of the path, keep the flow of traffic going, and don’t be an ass hole. It’s not that hard.

When I first moved to Philly I loved walking through the crowds, being a part of the flow. Now? I hate it. All I see is people being idiots!

I hate that I do this. I hate the stress it causes. I hate the energy I waste on being angry. I hate how people don’t seem to care about each other.

Of course, this is just a simple projection of my inner fear and judgment. And I hate that too. So, I had to find a way to get from point A to point B without an angry anxiety attack.

I have been playing with the idea that we are all made of the same stuff. I have begun to take away the story, the narrative, and let it lie that we are all….well, stardust, I guess. That we are simply the same. I have stripped the complicated excuses away. I have always felt myself an outlier, I have never really felt apart of the “all”.  So through my life, I created a fairy tale where I was the outsider banging on the door of existence for entry. Since this basic shift in perspective, though, this acceptance that it’s not the actions that deserve love but just the insane fact that we all ended up here at all, I began a little experiment to try and ease the angst.

As I walk down the street, I now say, in my head of course, to everyone I pass, “I love you”. I don’t mean I want them to come to dinner or even that I want to be friends. I just mean, I love you. We’re both made of the same stuff and by acknowledging that I can know love. I can love you. It is not an attachment love, but a recognition.

And guess what? It works. When I stopped putting labels on love, expectations of what I needed in return, and simply met existence with awareness, I softened. At the very least I became less hateful and angry.

For most of my life love was something I needed to fill the holes. I love love, I love being loved. I love soothing and reassurance. I love touch and acceptance. But that isn’t this love. This is a new love. A softening love. A simple, easy love.

I wasn’t loving wrong, but I was loving for the wrong reasons. There are many layers of love, many ways of connecting and I am grateful for the love I’ve known. But, I was missing the most obvious, the most simple love of all. The most basic but important kind of love. I wasn’t letting in the love that comes because we are all the same. That we’re here at all and we call came from the same source. I don’t know what that source is, but I will no longer punish myself or others because I don’t. It’s OK that I don’t know the source. Because what I do know is that if I can love strangers on the street simply because they exist, I can certainly love myself.