PART 1: THE WONKY PLACE

When I started working with Buddha he had these moments that we would call “episodes”. Basically, they were flashes of uncontrollable anger and/or sadness. Buddha decided to name the episodes the “wonky place”.

A lot of my students, most of whom had emotional disorder or autism, portrayed the same rollercoaster of emotions. However, in school, we would call these moments a crisis.

Unfortunately, once an episode starts, you usually have to wait until the child rides out the emotion, which can be REALLY challenging. Especially since the child can become verbally and physically abusive.

What they look like:

It is important to know that all episodes/crisis look different depending on the child. However, bellow is a list of things that I have seen both my students and Buddha do during an episode.

  • Biting
  • Spitting
  • Kicking
  • Hitting
  • Scratching
  • Throwing objects at both you and the wall
  • Cursing
  • Threatening
  • Crying

I have seen students do all of those things to themselves and to others. While the behavior is not ok, you have to realize that it sometimes cannot be controlled. I hope that by reading this list you can both relate and understand that you are NOT ALONE. That it is NOT your fault when your child portrays those actions and that 99% of the time it is NOT personal, no matter how specific they are.

How they start:

Something simple could set any child off. Below is simply a list of examples that I have personally seen set a child off.

  • Asking them to do a task they don’t feel like doing
  • Asking them to do a task they don’t know how to do
  • Transitioning from one thing to another (usually something fun to work)
  • A change in the schedule
  • Something changes about their routine (i.e. asked to eat breakfast before getting dressed)
  • Not giving them attention/ ignoring them
  • Raising your voice at them
  • Asking them to stop something they do not want to stop
  • It could also be medical:
    • Medicine could be too strong or wearing off
    • They could be overly tired
    • They might be experiencing something in their body that they can not explain
    • Their heart rate might be going up
    • They are in pain

 

Again, an episode is simply a moment of uncontrollable emotions that some children experience. Remember the word uncontrollable, because even though it seems like they are in control, they usually are not. It is important to know that it will pass. And the most important take away is that it is NOT YOUR FAULT. Never blame yourself or your child. They are on a roller coaster so you can ride with them or watch from the side. Either way, you must let them ride it out.

 

A Med for You. A Med for You. A Med for You.

We are no stranger to meds.

Want to know how anti-epileptics work? Give us a call.

Want to know how they metabolize in children? Yeah, we’re pretty much experts in that.

Want to know about reflux and constipation, cramps, and how to mitigate all versions of pukiness? We’re your go-to family.

Want to know which meds have a short half-life or a long half-life? Just ask us.

Want to know how anti-epileptic meds interact with each other? Done.

Want to know about adverse side effects? Here let me show you the book I’ve written on the subject. It comes with pictures and stories and a vial of endless tears.

Want to know about mood stabilizers?

Oh, wait. Gimme a minute, we’re just getting to that one.

For almost a year, we’ve been trying to decide between an antidepressant, a stimulant, or an anti-anxiety med…for my eight-year-old.

It’s taken four years of growth and mental development, anti-epileptic trials, and countless Vanderbilt tests to try and flesh out if Buddha’s behavior and emotional IQ is rooted in epilepsy, ADHD, anxiety, depression, or side effects from his anti-epileptics. It’s impossible. Because of course, it’s probably all of the above.

The question is, what do we medicate and what do we leave alone?

I told Buddha’s psychiatrist, “I just want to make his life easier”.  “I just want it to not be so hard for him to get through the day. And we’re at a point now where the tricks and tools aren’t enough.”

We have so many tricks on hand to make his life easier we should have a Vegas Show, and I should be walking around in sequence, Vanna Whiting all over the place with Dave pulling rabbits out of hats. Seriously, we will try almost anything to ease this kid’s daily challenges. And we have some damn good tricks.

Meds are serious. But so is mental health, and we are performing our due diligence. We have been considering these mood meds for almost a year. For our eight-year-old! We’ve been collecting data, weighing the pros and cons, and consulting other parents. We have monthly follow-up appointments with his neurologist, his psychiatrist, and his psychologist to talk through the options. We are trying to foresee all outlier possibilities and be aware of all the pitfalls. Mostly, we just want him to have it a little easier. Isn’t it enough that he seizes every day?

Until recently I didn’t think there would ever be a scenario in which we would add one more med to this poor kids’ already overloaded system. But then, of course, life is harder at some moments than others and answers can present themselves before the questions have fully formed. So when second grade with more demands and fewer friends happened, developmental stepping stones ramped up, a new antiepileptic drug with major adverse side effects was tried and tried again, we started to open our minds to the idea. Then three trips to the ER, one admission, and one intervention in which they spoke of taking him to the psych ward…or whatever they call it nowadays, hit us over the span of just a few months we were more than ready to pull those magic mood shifters out of a hat.

It’s hard enough to diagnose ADHD, anxiety, or depression in children, but add epilepsy and four other meds into the mix and it’s a downright, ‘your guess is as good as mine, let’s just try it and see how it goes’, Frankenstein experiment.

On an eight-year-old!! My eight-year-old!!

The cruel irony is that it’s very common for kids with neurological disorders to suffer from other neurological disorders. I guess it all goes hand in hand, or synapse to synapse, as the case may be.

So, here we are. Lit up for the world to see on a stage I could never previously imagine standing, and I have stood on many many stages. We’ve hit our mark and we’re getting ready to experiment again in the hopes that this time we might create a life without thoughts of death, high-cost impulsivity, or major emotional dysregulation. Mostly though, we don’t dream that high anymore. Mostly, we just want to ease his challenges and help him get through the day with some moments of emotional freedom that aren’t scheduled, measured, timed, or earned.

So, we’re waiting to check a few more boxes before we add another bottle to the already filled pill drawer, and then we’ll capture some lightning and flash it through the audience to see what we get.

Please hold, for Act II.

 

To-Do List or Not To-Do List…Do!

I used to hate making to-do lists. Oh sure, I loved the promise of a job well done, the enticement of items ticked off and completed. I’m a sucker for success. But I hated the pressure I felt from the ominous list of shoulds. I should be doing this, I should be doing that. Oh crap, I forgot what I was doing and now I’m not doing what I should be doing. Or, what the hell was I supposed to be doing and where did I put that damn list? Etc. I hated feeling like I was being directed by an omnipotent, bossy list that I was also responsible for creating. Hell, I can’t remember why I come into a room most of the time, how am I supposed to be responsible for breaking down big goals into doable steps each day? I clearly did not think I was up to that level that of accountability.
Because I don’t like to fail I would save myself the shame of guilt and regret by simply not writing a list to begin with. Then those judgey unchecked “done” boxes could never get the best of me. Ha! Yeah, ha. Jokes on me.
I used to think it was because I was a free spirit who did her best work in the moment. Organic and impulsive is when I’m at my peak. Or so I thought. I liked the panic of crunch time, the impending doom of missing my mark. That’s when I felt most empowered. Yes, I was ultra productive when I pushed it to the last minutes, reacting off of pressure rather than planning. Picking the red or blue wire with my career and self-esteem seemingly riding on the line led me the to success and an awesome high. Or so I believed.
But that risk got too high when my son’s wellbeing was on the line. And now I see how the risk was too high for my wellbeing too. I see now, in my chronic disease wisdom world, that if maybe I got lucky and paid the bills or did the laundry, or even ran a business without a list, I never really got to everything I needed to or dreamed of. I never really gave life my all.
I never saw what I was missing until epilepsy. I didn’t see the limits I was fabricating until real-life limits slammed down hard and stopped us in our tracks. That’s when I realized how deep my history of self-sabotage goes. That’s when I was afforded a new perspective and able to look honestly at how powerful I actually am. I was able to own that making the choice to set steps for the day is not a trap but a liberation.
Funny how making a to-do list is kind of the same thing as setting an intention. Setting your dreams, your goals in motion.
No wonder I hated them. They are always unfinished.
But now I know how tenuous life is. I don’t mean the created soap operas I like to create I mean real life actually ending. For real.
So now I know, in my bones, in my cells, in my heart and in my mind, life is always unfinished. It’s not about what you don’t get done, it’s about what you do! It’s how you chose to live that matters. And it is our choice how we want to live, even if epilepsy isn’t.
Life has a funny way of making you face yourself. And when it came down to actual life or death for my son, I wasn’t going to fail!  It first I had to admit I couldn’t do it alone. That took about a year. Then we had to find Alex. That took almost six months. But then, I knew I could survive and I was open to anything! And that’s when I awakened to the magic of a to-do list. That’s when I awakened to the power of choice.
And now my life and Buddha’s life is better. In a way, it’s better than ever. We’ve reached heights we didn’t dare dream for. He hits milestones previously out of reach and we celebrate them as never before. No, they are not typical milestones but they are magnificent. And they count! He is self-aware and responsible and he is more confident than ever. And our days? Oh! They are so much better. So much less stressful. There is less crying, less reacting, less anger, less fear. Our days are so much more fulfilled.
In a way, we owe it all to the to-do lists. In a way, they helped save us. I realized, by the grace of God and the indemnifiable Alex, that is wasn’t to-lists that weren’t working for me. It was me that wasn’t working for the to-do list. And now our life is working for what matters. Living!

FEELINGS THERMOMETER

When I started working with Buddha he had a hard time with self-awareness. Something that a lot of my students struggled with.  He had trouble using words to express when he was angry, happy or sad. So, I immediately printed out pictures and examples of what those emotions looked like. I also created a “How do I feel” chart for his room.

Come to my surprise… it didn’t work. Which, by the way, happens all the time! Over the past few years, I have tried a bunch of different tools with children that just don’t work. Either it is too confusing, too easy, or not interesting to them. It is so important to know that every child is different and every child needs DIFFERENT TOOLS.

But, I did not give up. I reached out and spoke to Buddha’s therapist and she told me that a “feelings thermometer” has worked for her in the past. So I went home and created a visual thermometer with numbers and colors to use. This time IT WORKED! He loved using it and found it so easy. Instead of using specific words to express his anger, all he had to say was that he was “at a 10”. And instead of saying he was feeling happy or content he could say he was “at a 1”.  Not only is Buddha more self-aware, but now it is easier for his parents and me to respond to his emotions (i.e. if he is at a 10 we do a set of cooldown steps that I will share in the next few weeks)

 

HOW TO USE THE THERMOMETER:

  1. Print it out and laminate it. Feel free to add other things to it if your child needs more assistance (i.e. pictures of real people angry or sad).
  2. Make extra copies so you can take it with you when you go out. For Buddha, I created 2 smaller versions and laminated it so he can carry it in his book bag.
  3. Review it with your kids. Go over the picture and explain what each number/color means. If they are feeling angry it will be at the top (in red) of the thermometer VS. if they are feeling content and happy it will be at the bottom (in green) of the thermometer. Make it clear that it is ok to feel any number.
  4. Ask them consistently as possible “what number are you feeling?”. It’s important to ask them this even when they are not feeling sad or angry. It’s just a good way to check in and have them practice.
  5. Give positive praise when they use it. Every time they honestly tell you what number they are on celebrate it! Feel free to give them points as well as an incentive.

 

Download the thermometer below along with a smaller version so you can travel with it 🙂

Thermometer Feelings Chart

Thermometer Travel Size

 

 

 

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.

“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.

 

TIMERS

As I introduce more positive behavior tools I want to stress the importance of a TIMER. Next to laminating and using the word “flexible”, a timer is something I use all the time. And I don’t think I can stress the word all enough. I use a timer with Buddha when he needs to complete tasks like homework, reading, doing dishes or even when he needs to shower. I find timers are effective for four main reasons:

  • It keeps your child on task– When a child is given a task with no time frame they usually slack off or forget about it. Having a timer keeps them going because they want to finish the task before they hear that beep.
  • It requires less nagging and reminding– Instead of constantly reminding your kids to finish a task you want them to do, all you have to say is “You have 2 minutes left”
  • It helps with independence– The main goal for my students is independence. I want them to be able to complete tasks on their own from homework to brushing their teeth. Once you use a timer enough, you can ask your children to use it on their own. You’ll be surprised at how much they can get done!
  • It’s fun- Turn using a timer into a game. Ask your kids how much time they think they need to finish a task and respond by saying “Yeah? I bet you can do it in just __ minutes”.

How to use it:

  1. Introduce the timer. Explain how it will work and even model it if need be. Make it clear that different tasks will have different times.
  2. Use the timer as much as you can.
  3. Go over the time frame before beginning the activity. For example, say: “You can play outside for 10 minutes. I’m going to set the time and once it goes off you have to come in”.
  4. Give reminders. Make sure to remind your kids when the timer is getting low. You don’t want to add extra stress, but it is very helpful when a child knows how much time they have left. Especially if your child has a hard time with transitions (i.e. getting out of the pool, switching from iPad to reading). A simple “Hey, there is 1 minutes left” will make all the difference.
  5. Give positive praise! When they complete a task before the timer goes off celebrate it. It’s hard to do, so give them the praise they deserve.
  6. As always, be consistent. Use the timer as much as possible and remember, once the timer goes off, that’s the end. Try not to add more time.

Here is a video of me using a timer with Buddha. I tell him the set time before he begins playing and I use reminders as the timer gets closer to the end. This task would have been near impossible 6 months ago. The transition from a fun activity to work was very difficult for Buddha, but using a timer made things so much easier.

Below are two links to timers that work great with kids. The first is a basic timer, while the second is more visual.

Note- Your phone or watch can be just as effective, but it’s better to use a visual clock with your child first before moving onto a timer that only you can see.

Timer 1:

 

 

Timer 2:

 

 

 

 

 

 

 

 

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.

 

 

Love-Part I

I love love. I mean, I really love, love. It’s everything to me, always has been. It’s the driving force behind every decision, good and bad, I have ever made. Love is powerful. Love heals. Love is a tool for growth and goodness. Love is respite and breath. Love broadens and coaxes out the best in us all. Love keeps its promises.

I believe free love is real love.

I believe love is the only thing that can save us from our collective self-destructive impulses, from ourselves.

I don’t always know what it looks like, but I know when it’s right. Love is real and right when everything works out…not usually the way I envisioned, but the way it was meant to. In the end, if I can get to the end, love is always right.

I was lucky, I came into the world knowing that love is the answer. And I was luckier still because even through heartache, bullying, and betrayal, I was encouraged to let love lead. Love was always an acceptable form of currency in my life, even if it wasn’t always evenly traded.

Since my first memories, I have committed myself to love; to absorbing, sharing, and holding, even hoarding when fear takes over, as much love as possible. From every atom in my sphere, through every second of the day, until forever, love has and always will be my answer.

What I didn’t know when I took on the mantle of love as my personal life quest, at the tiny age of impressionable and trusting, was the many forms of fear, judgment, and insecurity that masks itself as love. Love is not always discernible, but real love is always right. To me, that is what it means to be human. Finding real love is sifting through the pain to the heart.

Real love, pure and unselfish, empowers and emboldens us to be our best selves. To relish in the gift that is life, to see past the pain. It is the tradeoff of form and function, of suffering.

Love is worth it. As a child abandoned by her father, a young woman with a broken heart, and a mother with a sick child, sometimes it’s all too much to bear. But I will die, hopefully not soon, remembering the love. Love is the particles I will take with me into the next iteration of my being. I have no doubt.

Yes, I am human and I hurt…easily. And as such, love is complicated and full of expectation and foggy lenses that I will need to spend every day I am granted cleaning and refining.

But love is why I get up every day. And when I can’t get up it’s because I misconceive love, or try to control it to abate my grief and fear. Love has shown me what it means to be human. Love, through every struggle, sets me free.

How do I know love? That is a question deserving of far more attention than a simple singular post. So I am going to spend the next few weeks diving into the answers to these questions: How do I know love? What does love mean to me? What is love? How has love changed for me? And others.

To get me started, here is my answer to how do I know love?

I know love as a reflection of those I love. Their open hearts, their generosity, their kindness, their affection. I know love through a filter of experiences reflected through generations of resilience, trauma, pain, and joy.

I know love from:

A mother who was saved by the unexpected fullness of the love she felt for and by her children.

A father too afraid of himself for real love, who through lack thereof, showed me what love isn’t.

A brother who was saved by the love of his mother but can’t yet admit it so is held hostage by his resentment.

A sister who is taking New York City by the balls and making it her own because she knows the love of a good man. (That’s NOT the only reason, but it’s helping. And we all deserve the love of a good “other”)

A leader who allows himself mistakes but does not tolerate ignorance.

A boyfriend who loved me for who I was and then left me for the same reason.

A boyfriend who didn’t love me even though I pretended he did.

A dog who was batshit crazy, but insanely loyal to me until our last parting.

A friend who decided early on that she knew the love her heart needed and was smart enough to not listen to the naysayers. Me.

A stepfather, mentally ill and emotionally unwilling to face his own messes. A man who gave up fighting his selfishness and turned to manipulative control instead of love.

A director who saw more in me than I ever saw in myself and gave me the opportunity, guidance, and support to trust myself and shine as bright as my light could beam. A man who let me be exactly who I was in that moment without asking for more and then trusted me enough to hold the spotlight for him.

Three nannies who were exactly the people Buddha and I needed them at exactly the right time. Three different women who saved my life and made his so so so much better through their devotion, intelligence, objectiveness, spirit, and love.

A friend who has stood by me supported me, loved me, and accepted me for over 25 years. Through every bad boyfriend, job change, crazy family moment, and my son’s diagnosis she has been there because she is my friend.

A husband who didn’t believe in happiness, who didn’t believe himself capable or deserving of love until he held his son for the first time.

A son shattering from the inside out, who doesn’t know he may be systematically dying because the love from his parents is enough…for now.

Anxiety, Bite Me

Today was a high anxiety day. Like eleven on a scale of one-to-ten, high. It was a nail-biting, shallow breathing, jaw clenching, “danger, danger, Will Robinson”, high anxiety day. And there wasn’t a damn thing I could do about it.

These days are fewer and farther between lately for which I am mad grateful. But the familiar panic is always hovering on the horizon of my self-awareness. Like some side mirror where things are closer than they appear, a flustered funk is usually just a periphery glance away.

On these bad days, I need a system of recovery techniques practiced and ready at my disposal if I am to make it through with any modicum of success. Just like Buddha, I have a set of tools well oiled and ready to go. These daily machinations, if you will, keep me up and moving. They decide if I leave the house and whether I can be present throughout the day. They determine whether I react with negative emotion or respond with compassionate awareness. And they decide if I end the day feeling accomplished or in a sad heap feeling like a pile of useless shit.

I breathe, I exercise, I do lemons and turtles (tricks Buddha uses where you tense and then relax your body), I call a friend, I eat some chocolate, I get out of my house, I write. Sometimes I shop. I know, not the most healthy decision, but I relent occasionally and end up with flamingo flip-flops or weird kitchen gadgets and tea towels. Not the best, but it gets me away from myself.

Lately, I have been working on deciding to make a decision that might help instead of waiting for fate to play out as I flounder in my doubt and physical pain. In my anxiety paralysis, as I like to call it. This is a pain all too real considering it comes from my head. So I try to tap into my body and help the worries settle. I use my acting exercises or my somatic experience techniques. I’m full of self-help jargon.

I don’t like to meditate in a heightened state of anxiety, which is, of course, exactly when I should meditate. But it’s too hard. It takes too much effort. I’m not very good at it, honestly. When I’m “activated” I can’t manage it and then I feel worse for my failure at being unable to help myself so I don’t even try. I’m working on building the muscle memory when I’m feeling good so I can have daily access to that tool. It’s a process. A slow one.

On the really bad days, I live in a state of fear and failure so pervasive all I can manage is to stand in the middle of my living room stranded between flight and fight. Literally, I just stand there not knowing where to go in my own house. I am frozen, wishing I was anything else but me.

There have been too many days like this. My anxiety is real. As a child, I was sensitive and reactionary, socially afraid and prone to dramatics. Now I have a label, anxiety, and I am much better for it. I am not one to shirk responsibility but it makes me feel better to know that it isn’t my fault. That I wasn’t born wrong or broken. I just have anxiety.

Although I am grateful to be able to call it out and get help from professionals, it is exacerbated by my life with a “sick kid”. So on the one hand, I am better prepared for the pitfalls but on the other, it’s an un-winnable war.

Today took me by surprise because lately, I have been rockin’ a new attitude, a soul shift, that has helped keep the anxiety monster out of my throat and gut. Not only is this great news, but it goes a step further. I am becoming aware of the moments I feel good. I am noticing and getting comfortable with feeling Ok. This is huge for me and a long time coming. I’m not doing it alone, I don’t know that I could. The amount of concentration and practice it takes to catch a subtle moment of OKness is like trying to catch a fish with no pole, no net, and no arms. But I’m starting to get the hang of it and it’s awesome. I am living again and I love it!

Just…not today. Today I have gone through and through and through my self-help steps but still can’t shake this knot of tension threatening to cut me off at the nose, or diaphragm as the case may be. Honestly, if I take one more deep breath I’m going to pass out, so today calls for the mother of all coping skills. Sitting with my anxiety. Accepting my feelings. Naming my fear and shame and allowing them room to do whatever the hell they feel like doing to me for a little while longer.

I think we’ve all heard this enough to know it’s true. At this point, it’s so ubiquitous, it’s trite, which somehow only amplifies its power. I know that to ensure a feeling doesn’t harm me, I must be able to call it out, name it, and sit with it. I must allow it space to undulate and disperse on its own time. I must see it if I am to curb it.

The caveat to this is, of course, is if we are a danger to ourselves and others and then we must call for help with a fervent hustle! We must be protected as I have to protect Buddha from not only his seizures but sometimes from himself. This is real.

I can’t give in but I can accept.

From what I’ve seen, getting to the crux of feelings goes against everything society teaches us today. It certainly goes against the way our parents were raised which can’t help but bleed into our subconscious thoughts and patterns, blindly leading behavior that negates proper emotional processing. So we run from, push down, hide, and negate any feeling we’ve learned can hurt us. Any behavior we see has put us in either emotional or physical danger. I don’t know about you, but I have a lot of these examples.

In other words, it’s way harder to sit with my feelings than it seems like it should be. I don’t want to, I forgot how or wasn’t taught, and doing so I am afraid I am weak. It all just sucks but it feels like we aren’t allowed to let it suck so it poisons us from the inside out. And until we can see it and name, it will continue to ooze its slow death.

Here’s the good news. Today I’m not great, but because of this soul shift along with surviving the last few years of hell and plenty of help, I know that this feeling won’t last forever. It may last a few hours or it may last days. It will definitely last longer than I’d like it to, but either way, it will pass. This seems like it should have been obvious to me as so far the proverbial sun has routinely come out. For whatever reason though, probably my stubborn control-freak-streak, I needed this lesson beat into me with each new stage of my life. But I’ve got it now and it’s a tool I’m grateful to have at my disposal.

So today, I will sit and observe my anxiety. I will let it be and watch to make sure it doesn’t take me down a self-destructive path. I will hate it with every breath. But I will let it be. Because I know tomorrow will be another chance to hold my child, kiss my husband, call my mom, and laugh with my sister.

Tomorrow I, hopefully, will take a free breath and start again. The sun may not come out, but it won’t go down on me either. Not today!