Thursday, November 17, 2016

Epi-what?

November is Epilepsy Awareness Month.  Ten years ago, I wouldn't have known — or really cared — about that little fact. I was one of billions of people in the world who felt no need to know or understand epilepsy. But then, thank goodness, that changed. Not only did I learn about this vexing neurological disorder, I was given the chance to work with some truly inspiring people who taught me  some of the greatest lessons of my life.

In February 2007 I was offered a editorial job for a custom publishing division of Time, Inc. I had experience in health reporting, custom publishing and marketing, so it all added up to a great job, but there was a catch: One of the publications I was asked to manage was all about epilepsy.

Just like that, I was charged with developing content about a somewhat obscure neurological disorder that effects 1 in 26 people. And I knew nothing about epilepsy except for what I'd seen on TV.

Suffice to say, I was nervous the first time I spoke to my clients at the pharma company who were underwriting the magazine. Learning about epilepsy was like taking on a new language. Since most people don't like to talk about this highly personal chronic condition, I couldn't imagine how I would find subjects to interview for the feature stories. Fortunately, the pharma had created a patient group and I was given access to them.

Slowly, I got to know these men, women, girls and boys whose common denominator was a condition that caused their brains to misfire. They all had epilepsy or had loved ones with the condition, but each story was as distinct as their symptoms. No wonder the general public has a hard time understanding this disease.

Epilepsy causes physical and emotional turmoil in the lives of those who suffer from uncontrolled seizures. One-third of those who have this condition cannot be treated medically. For those who do find a treatment (or combination of treatments), they live with the specter of a debilitating condition that can morph and return anytime they are stressed or going through a biological change, such as puberty or menopause.

Their stories amazed me. Could I have such a good attitude if I had seizures? Would I be as upbeat as the moms I met, if my son had epilepsy? No matter their symptoms or set backs, these individuals were willing to share their stories with me and with the readers of our magazine because they wanted more than anything to end the stigma that has dogged epilepsy since Socrates.

Interviewing these people with epilepsy and their caregivers helped me to become more open with my own short-comings and limitations. Listening to them talk about how they were not willing to give up or settle less than the best possible treatment,  gave me courage to overcome my own challenges. If a man who had to relearn how to talk and feed himself again could remake his life and be happy, then I could certainly relearn how to live and be happy after going through a divorce or losing my job.

Yes, in 2009 — the week after I lost that awesome job, which placed me in proximity to these inspiring people — I interviewed a young woman who had lost everything when she started having seizures at age 22. She was on her way to realizing her dreams with a great career and a new family when her first seizures altered her course. In fact, she almost died in a horrible car wreck after having a seizure behind the wheel.

As bad as I felt about losing my job, it was hard to muster self-pity after hearing her story. Sure, my life was in turmoil, but nothing compared to what that young lady experienced. Due to no fault of her own, she lost not only her job, but her home. She ended up in a women's shelter with her young daughter. And yet, years later, at the time when we spoke, she was graduating from college, beginning a new career, and raising three children. That, my friends, is inspiration.

Last week, I got to spend time with these amazing people again. You see losing my job didn't mean losing touch with them and their stories. For the past seven years, thanks to Time's editors, I've been fielding freelance assignments for the magazine I once helmed. And although much in my life changed during that time, I endured as well. In part, my resilience came from the lessons I learned from my friends with epilepsy.

From them, I learned how to listen — really listen. I learned the meaning of true compassion and honesty. I learned how important community is and how much healing occurs when we reach out our hands to each other. I learned to be a better reporter and a more compassionate person because of knowing all these courageous people. And yes, I learned A LOT about epilepsy. I can now talk with neurologists without missing a beat. But that's not what really matters. What matters is that I discovered when I step outside my comfort zone, I can embrace so much more than I ever thought possible.

So, this month, I want to say thank you to all those amazing people who live with epilepsy. It's been an honor to cover your stories and help shed light on a very confusing and complicated disease. Thanks to you, I didn't give up when my life became difficult. I may not have seizures, but I do know how it feels to have the rug pulled out from under me. Learning to live with the realities of life is the greatest gift that any of us can ever enjoy. Things go "wrong" all the time (right?), but there is always something to learn — if I am open to the possibilities. 

Tuesday, November 8, 2016

Election Day Meditation: "Water is taught by thirst"

With the outcome of the Presidential election to be decided within the next 24 hours, I am trying not to be afraid today. I am not Republican or Democrat or Libertarian, Green or Liberal. I don't take a pure party line. I've always voted for the candidate who best reflected my principles and whom I felt would best serve our country. 

But because I'm not omniscient and cannot possible know for certain who would best fit the bill, I also trust our democratic system. I trust that our collective consciousness will prevail. What may be "best" for me, may not be "best" for the majority of my neighbors. I believe in a higher power.  I have voted in countless elections and trusted, and I have never felt the sense of impending danger ... until today.

So I'm sitting with this feeling of panic and anxiety today. Where does it come from? It is that familiar feeling of being helpless, out of control. Why? Have I ever really been in control of our country's politics? No. Have I ever been harmed irrevocably by decisions that were by our president? Not sure.

I have felt this feeling before, although not related to politics ... I felt this way when my marriage was ending. And I felt this feeling when I knew my job was in jeopardy due to downsizing. This anxiety is not fear of something I know; it is fear of change — of the unknown. The feeling stems from my conscious self trying to reject the reality of what is actually happening. The tightness in my body is conflict between reality and my ideals.

I can honestly say that I have never felt this fear about the election of any other president. Regardless of the outcome of today's election, there will be shifts in the world as we know it. Some changes may seem adverse. Other changes may appear to be beneficial. But there will be changes in our country. I cannot know the extent of those shifts in legislature or attitudes, but tomorrow there will be a lot of people who will be upset and disgruntled. Many of my neighbors will be sullen or outraged. Some might even turn their deep-seated fear into violence. There will be people in countries around the world who I will never meet who will take the results of our election as an insult or threat or a joke or a sign of weakness.  So there it is: My fear. And the only way I know to overcome fear is to face it, and give it a name.

 How did we get here?

Yes, Trump and Clinton differ many ways but there seems to be a common denominator: fear. Trump played off our fear of terrorism and our fear of economic depletion and our fear of politicians. Whereas Clinton spoke to our fear of having a president who was a misogynist, a liar, a cheat. Is it any wonder I'm feeling nervous right now?

To face my free-floating anxiety, I have to become grounded in facts. Although I'm not a political expert, here is what I know: Today did not just "happen". 

A billion actions, both intentional and unintended, occurred to bring together the two candidates on today's presidential ballot. In part, we ALL created this day. Whether we supported a candidate or an issue directly or by omission, we helped manifest this reality. There were many, many causes and conditions which had to "ripen" in order for today's election to take place. I'm not aware of many of them, but one comes to mind. 

Whether you watch and read it or not, we support a media that makes billions of dollars off of outrageous talking heads and controversy. Although Clinton did not exactly shy away from coverage, Trump, in particular, used his outrageous personae to dominate both traditional and social media. But no matter how loud and persistent the voice, these media channels are only successful if there is someone to receive and react to the message.  

A record 84 million viewers tuned in for the first Trump v. Clinton debate. (To put this in context, the 2016 Superbowl drew approx. 114.4 million viewers. The 2016 premiere of The Walking Dead drew 17 million viewers.) I don't know how to calculate the revenues earned by the various news and social media sources from this election cycle, but I suspect it too is record-breaking.  In short: Controversial candidates = Greater interest = Larger viewership/readership = Greater advertising revenues. 

But before I vilify The Media and all of us who enable train-wreck TV, I need to consider another perspective. Because where there is a negative outcome, there is always a positive side.

Could this toxic election season serve a more wholesome purpose?


In a 2011 Psychology Today article entitled The Moral of the Morbid, Eric G. Wilson, Ph.D. posits that our attraction to discourse and disaster is necessary to our mental health. Citing Carl Jung, Wilson writes: "[Jung] maintains that our mental health depends on our shadow, that part of our psyche that harbors our darkest energies, such as melancholia and murderousness. The more we repress the morbid, the more it foments neuroses or psychoses. To achieve wholeness, we must acknowledge our most demonic inclinations."

If Jung is right, then our current political climate may actually be healthy in that it is allowing to surface — rather than suppress — our collective fears with the darkness (such as climate change and terrorism) in our world today. Witnessing the chaos played out by both Democrats and Republicans may be what we need to shock us into a deeper desire for a kinder, gentler, better America.

"When we agonize over what has cruelly been bereft from us, we love it more, and know it better, than when we were near it," Wilson writes. "Affliction can reveal what is most sacred in our lives, essential to our joy. Water, Emily Dickinson writes, is 'taught by thirst.'"


Today, after witnessing the train wreck of this election cycle. I thirst for leaders who are wise, compassionate and filled with integrity. I also acknowledge that I (and everyone else in our country) has played a part in affirming the present situation. So now the questions are:  Where do we go from here? How do we encourage and reward integrity in our leaders? What can we do differently to ensure that our thirst for peace is sated?













Tuesday, October 11, 2016

Why Donald Trump Needs Compassion

OK. I know ...  But if you're reading this already, why not continue? Let me assure you I am not a Trump supporter. I simply do not believe he has the qualifications to become our next President. But I do believe that everyone  — yes, EVERYONE — is deserving of compassion.
Young Donald Trump
from http://whoisbiography.com/donald-trump-biography-life-education-career-facts/
Of course, I don't know Donald Trump. Frankly, I didn't watch the debates because I couldn't stomach witnessing a train wreck. I'm not a politically-minded person. I rarely watch the news at all. But I do know a few things about human nature and I can assure you this: No matter how obnoxious, offensive, deceitful, or downright cruel a person is, he or she was once an innocent child. At some point in his life, Donald Trump was a helpless babe who cried out for attention and cooed and smiled when someone soothed him.

I don't know when he took on the ego that he still posses, but his ego began to form sometime in his formative years, during childhood — most likely around the age of five or six — as it does for us all. Around that time, little Donny Trump was wounded emotionally, perhaps even physically, and it caused him to put on the thick suit of ego armor that we've been witnessing for decades now.

Somewhere along the line, he heard the message: "It's not OK to be vulnerable or to trust anyone else."* Maybe he learned that directly from his very successful, real estate tycoon father. Or maybe he heard that message in his own mind when he experienced a slight or betrayal by an older sibling or playmate. It doesn't matter what happened, what matters is that the sweet, innocent child that was Donald Trump could not reconcile the reality of a situation with his idea of how his life should be and he suffered — just as we all suffer when reality and our ideals don't mesh. This is what it means to be human. And we must go through this "wounding" in order to continue our natural trajectory of growth and maturity.

No, I don't know Donald Trump, but because of his public personae — intimidating, authoritative, commanding, etc. — I can deduce a bit about his personality before he was wounded, before he became the tyrannical 3 a.m. Tweeter.

Before he experienced his wounding, Donald Trump was vulnerable giver. As a young child, he gave out of joy and without any sense of manipulation. He had a great need to be loved. He was the child who offered you a taste of his ice cream cone or proudly gave you his best crayon drawing. He might have tried to cheer up his mother when she was sad or tired or lonely. He might have tried to help his older brother or sisters, or to defend his younger brother. Indeed, he wanted to be valued and loved for this service. Perhaps it was because he did not receive this validation as a child that his ego came to the fore.**

Whatever happened to him along the way, his ego formed and is still raging against the injustice that occurred so very long ago. It's sad, really, because he is not aware of how his ego impacts those around him. I honestly believe that Trump's greatest problem is that he is unconscious and from my experience, people who remain unconscious of their own egoic nature tend to continue to rail against reality — and suffer

I think all those fact-checkers at NPR would concur. Trump is in a deep state of denial. And the more his fellow Republicans denounce him, the worse he will become because those cancelled endorsements only serve to validate his long-held internal message, "You can't trust anyone."

 That's why he's a loose cannon. He refuses to allow anyone to "control" him, even his campaign managers. He is so afraid of being controlled or harmed that he will lash out at everyone around him.  So Trump's rants are not filled with strength, but with fear.

In his mind, Trump is trying to defend America. He sincerely wants America to be great; and he wants to defend his country against all threats — perceived and real. But along the way, he has forgotten how to take care of anyone — especially himself. He has lost all compassion — the very gift he was given at birth.

So while roasting Donald Trump for all his ridiculous antics is fun, it is also fanning the flames of his egoic self — which is just going to make things worse. Indeed, what Trump really needs is a large dose of compassion. I'm not sure he will ever find compassion for himself, but that would go a long way to healing his long-held wounds. I'm not saying he should be President. I'm not saying that we should ignore the hideous things he's said. I'm just saying that we should see him for who he really is: A wounded child with nowhere to turn.



* From The Wisdom of the Enneagram by Don Riso and Russ Hudson
** From Becoming Conscious: The Enneagram's Forgotten Passageway, by Joseph B. Howell, Ph.D., Chapter 12, "The Soul Child."

Tuesday, April 19, 2016

Ask, Seek, Knock ... That is All.


Today — as on many days — a Facebook friend asked for prayers. Almost immediately replies poured in. "I'm on it!" "Praying for you now!" Others posted the little emoticons of folded hands or hands reaching up in the air.

I didn't respond. Does this make me an awful person? I hope not. I just have a different idea of how to pray.

I used to pray all the time. I thought of God as a gumball dispenser of "good" stuff. But when the situation was not resolved my way, or in a manner that seemed positive to me, my faith was rocked. Of course, I see now that this wasn't God's shortcoming. It was my shortcoming. When I prayed to God for a specific outcome, I set myself up for disappointment.

I recently read a quote by Soren Kierkegard about prayer and it crystalized the real value of pressing my palms together, closing my eyes and having a heart-to-heart with the Divine. He said, "Prayer doesn't change God, it changes him that prays."  Or as Mother Teresa said, "... I used to believe that prayer changes things, now I know that prayer changes us and we change things."

So how does prayer transform me?

In my experience, prayer is transformative when (and only when) I ask God to change my perspective on a situation. I am not asking him to change my ex-husband or my son or the woman who bugs the crap out of me in the check-out line at Publix. I'm asking God to change me, to change the way I see and respond to the situations and people who challenge me. When I make that request, something miraculous happens even though I'm usually not conscious of it right away.

The moment I let go of my fixed approach to a situation or person and I allow that maybe, just maybe there's another way to resolve the situation, I feel relief. Maybe, just maybe, there's a new thought or idea that could shed a peaceful light on the day. That's what prayer does for me. It creates a little crack in my closed-up-tighter-than-a-drum-mind and that crack allows another idea —a better idea—to enter.

The good news is this: No matter how hard I pray, I don't believe God is not going to change his approach. He's not going to say, "You know, I was going let you to suffer, but now since you asked so nice and said pretty-please, sure I'll spare that terminally ill person's life, allow you to come into a small fortune, or keep your child from being arrested for a crime he committed." The God of my understanding is too wise to work that way. And yet, I used to give God suggestions for how and why to effect our lives —as if God needs help knowing what to do!

Years ago, I realized I had no idea how to pray. I was trying to amend my control freak ways, and dictating my wish list to God just didn't seem like the best way to go about things anymore. So I googled, "How to pray for God's will in my life?" Within a second, there were more than 20 million answers/results. Among them was an answer that was so obvious it made me laugh: The Lord's Prayer. As it turns out, Jesus was once asked the same thing by his disciples. His answer? "Thy kingdom come, thy will be done ... give us this day our daily bread and forgive us our trespasses as we forgive those who trespass against us, and deliver us from evil ..."

In The Lord's Prayer, Jesus didn't ask God to transport him into a world without suffering. He asked for acceptance, for forgiveness and to be sustained. Later, in that same New Testament passage, Jesus goes on to tell his disciples that not only will God answer our prayers, but he will always provide a healthy answer — never one that causes pain and suffering.

According to Luke 11:9-13, Jesus put it this way, "So I say to you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. 10 For everyone who asks, receives; and he who seeks, finds; and to him who knocks, it will be opened. 11 Now suppose one of you fathers is asked by his son for a fish; he will not give him a snake instead of a fish, will he? 12 Or if he is asked for an egg, he will not give him a scorpion, will he? 13 If you then, being (human)*, know how to give good gifts to your children, how much more will your heavenly Father give the Holy Spirit to those who ask Him?”

Jesus says, "ask." Simple. He doesn't say, "specifically ask for what you think is best." He just says, "Ask." Ask for help, guidance, relief.

And then, he says, "Receive." Although he doesn't exactly spell this out in Luke, I believe he means accept the answer, accept what is given to you. Receive the outcome. Don't whine that it wasn't what you thought you wanted. And I love that Jesus goes on to clarify and affirm by essentially saying, "Hey, God isn't a sadist. He's not going to give you poison. He's going to give you 'good gifts'." But I must be open to the possibilities, and accept that whatever comes is a "good gift" — no matter how crumby it might appear to be at first.

Although Buddhists don't pray to God in the same way Christians do,  Buddhist Zen Master Kyong Ho provided this beautiful perspective on prayer:

“Don’t wish for perfect health. In perfect health there is greed and wanting. So an ancient said, ‘Make good medicine from the suffering of sickness.’

Don’t hope for a life without problems. An easy life results in a judgmental and lazy mind. So an ancient once said, ‘Accept the anxieties and difficulties of this life.’

Don’t expect your practice to be always clear of obstacles. Without hindrances the mind that seeks enlightenment may be burnt out. So an ancient once said, ‘Attain deliverance in disturbances.’”

Buddhism has taught me to not ask for an outcome that only benefits me, but to pray for an outcome that will benefit many, many people — if not everyone in the whole, wide world. That's how karma (cause and effect) works; its ripples extend out to the shore. Things that happen in this life are not all about me. Events that occur are not even all about my family, or my extended family, or my community. But I can sit there and ask for a specific outcome because I know what's best ... Right.

So if you post a request for prayers on Facebook, I may not respond, but I will pray for you to make a place in your heart for acceptance of what is. Ultimately, I believe that’s how God answers all of our prayers: He creates a place in our hearts for reality.

* The Luke translation actually reads "if you being evil," but I contend evil is a little over the top. I translate this to mean that if even parents who are human and flawed want to give your children wholesome things, then you can imagine how God, the Divine, who is not selfish or fearful, would want to give his children only the best.

Friday, March 25, 2016

Happiness is a Choice

Easter is a time for rebirth, reminder and renewal. This week (Holy Week, no less) I was reminded of a very important lesson. My work as a freelance writer brings me into contact with a lot of inspiring people. This week I was assigned an article about people with Parkinon's Disease. I've written many tories about people with chronic, debilitating illnesses, and I am always — without exception — humbled by the experience.

The ability for people to transcend their physical and emotional challenges is quite impressive. Of course, the people who are chosen to be interviewed for these magazine articles are highly-functioning, inspirational people, or they wouldn't be selected. And I'm sure there are a lot of people with chronic illnesses who are bitter, angry and miserable. I don't fault them. But to find the good in a really crappy diagnosis, is a lesson I need to be reminded of time and again, because I could find myself in a similar situation at any moment. None of these people set out in life with the knowledge that they would develop Parkinson's Disease. They were ambitious, young, hopeful, strong people who wanted everything that I want out of life. And for some reason that is beyond all scientific comprehension, at some point  in their lives, their brains began to conspire against them.

This week I interviewed a woman who was diagnosed with Young Onset Parkison's at age 27. At that time, she was newly married, pregnant and had just realized her life's dream by completing her medical training. Although she knew the prognosis was unavoidable, for the first ten years after her diagnosis, she lived in denial of her disease. "It wasn’t a conscious decision," she told me. "It was a defense mechanism and avoiding the subject, of not thinking too much about it."

She had two more children and continued to work full time. But as time went on and her symptoms became more severe, she had to face the hard, cruel reality of her condition. She was angry at the situation. At first, she felt that Parkinson's was robbing her of her career and vision of her life. She started to become bitter and pessimistic.

And then, something wonderful happened: Awareness. She saw herself becoming a person she didn't want to be and who she didn't even like. She made a conscious shift in perspective. She could not control her Parkinson's and its symptoms. "Between stimulus and reaction there’s a moment in time when you decide how to react," she said. "That could be applied to life itself. I had no choice about having Parkinson's. I wouldn’t wake up one moment with my symptoms gone. I wouldn’t wake up with the lack of tremor and pain. But it was up to me to how I faced this diagnosis. Denying it was my choice and looking at how to optimizing my life despite the disease and embrace optimism again was also my choice."

This lovely mother of three and highly skilled physician chose optimism. She chose to control the one thing that she could: the way she thought about her disease. Rather than see it as the enemy, this amazing woman began to see all the gifts she'd been given by Parkinson's. "I could focus on the fact that I had to leave a career I loved and that there will be difficult times ahead," she said. "Or I could focus on the fact that now I have more time with my husband and my children and as an patient advocate. I honestly believe this is where I’m supposed to be right now. My purpose is defined and I’m willing to take it on."

Amazing.

It's never easy to accept the difficulties in life. When I whine because my son loses a tennis match, or an editor asks for a rewrite, or I have to have a tooth ache, none of these things seem inherently "positive." But understanding without a doubt that no event is ever 100% "bad" does invite me to find the "good" in any circumstance. I honestly think the difference between happy, successful people and unhappy, unsuccessful ones is the ability to accept both sides of any given equation and not reject the side that doesn't seem to benefit them. In fact, it's the side that seemingly is a detriment where I often find the most value. Loss leads to greater determination. The re-write leads to greater skill. Physical pain and discomfort lends itself to heightening compassion for those who experience persistent pain. And the more I practice seeking an optimistic viewpoint, the easier it gets. I build up my "find the good" muscle. The momentary disappointment will pass, but how I react to it and experience that moment can live on as I transform more and more negative experiences into valuable opportunities.

If that mom with Parkinson's can do it, surely I can try.