epilepsy – Lisa Z. Lindahl

November 29, 2015

One Woman’s Evolving Epilepsy Cycles

from zaldenjace - hubpages Life cycles through different stages. In Feminine Wisdom we know about the main three that influence the developmental cycles of women: Virgin (or maiden), Mother (self-explanatory), and Crone — or as I like to think of the last — Wise Woman.

I am at the Wise Woman stage. I’ve noticed and experienced many sub-cycles within the larger ones. All of us have. But one sub-cycle that is rarely talked about is those cycles that a woman* with epilepsy can go through — or more accurately, the evolving nature of the disease and how it can impact us. It is not static. (*I’d include men, but I have no current details about their gender-specific experiences).

And I’m betting that I have not been alone in experiencing many of these cycles. I hope that any others with epilepsy who find my observations familiar or, conversely, disagree with some of my comments will respond with their own, and add their own experiences in the “Leave a Comment” section. For those readers without epilepsy, I hope this is educational — maybe even enlightening.

When I was a maiden I had absence seizures, diagnosed at age 4. Back then they were called “petite mal” seizures. The doctor let my parents know that when I reached puberty the epilepsy could either disappear or escalate. There was no way to know for sure. So we all had hope and besides being constantly nagged “did you take your pills!?” epilepsy didn’t have a huge impact on my childhood, at least from my perspective. This was the first cycle of my epilepsy experience. Really I was blessed, as I knew nothing of living without seizures.

My first grand mal (meaning a full- out convulsion) at age 12 took place rather dramatically in my 6th grade classroom. In an aura I suppose, I remember the boy I had a crush on laughing as I went down. It could have been the ruin of my budding social self. But I consciously chose to go back in the classroom a few days later with the attitude of holding the ridiculers in disdain — to consider those who would mock me as insensitive jerks. I went back with my head held high. It seemed to work; I wasn’t bullied or shunned. Because I went forward as if all was fine, so did my classmates. So began the second season of my evolving relationship with epilepsy.

I was lucky. I only had grand mal seizures infrequently, usually around my menses as I came, in time, to notice. The doctors back then were adamant that there was no correlation. (Now they know differently). As a young adult my seizure pattern became sort of reliable. I was able to manage my seizures enough to have a life. I went to college, got a job, was fired from that job because of an epilepsy-related issue (I didn’t drive), and married. I became self-employed.

But as my motherhood years rolled around and became fewer, I realized I was afraid to have a child. Being responsible for myself felt enough — to be responsible for an infant as well made me anxious. What would happen if I had a seizure while holding my baby? I decided that I’d have children if I met & married a supportive man who would be an active parent. I never did. I married twice, but both men were not interested in having children. During the better part of those years I was busy running a business and chose not to notice as my time for mothering rolled by. Besides, the business was my baby!

After selling that business I spent 9 years volunteering with an epilepsy advocacy organization. Learning a great deal there, I came to do a fair amount of epilepsy education. I traveled around the country and spoke about epilepsy issues and successful seizure management from a patient’s point of view. Often I spoke of the gender differences, having worked on that specific topic.

This last was an empowering cycle. Though I switched medications a few times, had some bad patches, etc., I had made that part of me — the person with epilepsy — public, found I had a role to play and could be helpful in and for that community. It was very fulfilling.

Here in the Wise Woman years I had assumed I’d be okay — less hormone interaction, on the anti-epileptic drug that gave the most control with the least annoying side effects (finally!). I’d envisioned being entrenched in a supportive community, with my second husband by my side. Not to be.

Frankly, now I am a bit frightened. My seizure type and pattern have changed. Or seemingly so. The supportive husband has fled. My siblings all live far away…and I don’t yet know how to manage this new set of circumstances.

And I must learn to in order to maintain my independence and well-being.

Meanwhile, the docs are having difficulty finding appropriate meds. I was on one that I liked a great deal — no breakthrough seizures and few noticeable side effects. Or so I thought — seemed my dream medication caused some organ stress, and I had to get off it.

For those of you who know about epilepsy you know how difficult and risky switching your meds can be. I’ve come to know that I have to set aside a month of living my usual life to responsibly switch. It involves: the tapering off period while slowly adding in the new drug — the watching for serious or simply difficult side effects. The nausea, dizziness, cognitive fuzziness that can set in while my body readjusts. The seizures that can occur.

I dislike asking for help. Gawd forbid I should inconvenience anyone! (I’m trying to work on where that came from). Most people do not understand what is going on in a medication change, the level of risk and how vulnerable I feel. It’s my issue and problem after all. And the epilepsy cycle that is going on now has me quite up a creek. Who knew I would be at this point now? Not me.

And I wonder: is this the last cycle in my epilepsy evolution, or are more to come? I gotta stay tuned, don’t I?

Dang — no rest for the weary!

October 18, 2015

Flashback II

Another essay from my archives, this was written in 1992… So precocious! I was only 3 years old then…

Vestigal Senses?

Kirlian photography has shown that we have electrical current running out the kirlianfingers-1 tips of our fingers and toes. On the market now there are even little toys that can be made to make noise by placing your fingertips on tiny little terminals placed there for that purpose.

This got me to thinking. What if, once, we humans had far greater power and greater control over it? What if the mysteries of how the pyramids were built, or the Mayan and Incan temples were built could be explained by saying that man was simply capable of moving great objects by pointing his hand, directing his inner energies and moving the object?

We know that ancient civilizations had knowledge and wisdom that we, in our narrow-minded obstinant adherence to “scientific reasoning” cannot account for or give credence to. How did the Mayans and Incans have such a sophisticated understanding of astronomy? we ask in wonder. How did the ancient Egyptians know enough of engineering to build the pyramids?

What if, what if ancient mankind had a superior understanding and control of NATURAL energies? We, who are so dependent on the clumsy MECHANICAL way of doing things…what if flying through the air was not dependent upon a huge metal and fire machine, but instead on one’s inner, disciplined energies?

I think of the old tales of wizards and gods who could hurl a bolt of lighteneing from their hands, or see great distances, or know of impending events before they occured. And I wonder. I wonder if these were the last of humankind to lose their full powers. I wonder if we have evolved away and out of the knowledge of that power and are left only with its vestiges… a little trickle of electricity dribbling from our once-great and magical fingertips.

And then I get to thinking about the human brain. With all our science and reasoning it remains mysterious and unknown. The researchers tell us that we are only using about a tenth of our brains, as far as they can tell. And I think of all those neural pathways conducting electricity through our gray matter…and I wonder some more. Because I have epilepsy, I know–or have been told–that seizures are simply too much electricity coursing through the brain, making the current jump track out of the containing and directing pathway and short-circuiting the entire brain functions. Oh, really?

What if. What if people who experience convulsions are simply throw-backs to a time when we had more power, and the only deficiency of these modern day, unwitting wizards is that they have no idea how to channel that energy, use it, discipline it, direct it…and so it goes through a cycle of build-up/release, build-up/release, and so on.

The oracles of Delphi in ancient Greece were considered holy, wise and able to communicate with the gods because they had convulsions. It was in the convulsive state that they were supposedly communicating with the gods. Later, in medeval times convulsing people were thought to be possessed by the devil. Either way, the taint of the supernatural and/or paranormal was on the individual who experienced the altered state of consciousness that we call a “seizure disorder.” And today, modern man’s response to this is to apply drugs to suppress the experience. It is what I call the “if you can’t understand or use it, make it go away. Suppress it with drugs” method of coping. How much ancient knowledge or ability has been lost in this way?

Intuition, ESP, psychokinesis, prophecy, astral projection…the list is very long of things our modern science cannot explain and so belittles.

What if we were once a race of wizards, left now with only the faint dregs of our original powers and knowing? We now have only our vestigial senses…

September 6, 2015

Does Mainstream Media Create An Unhealthy “Reality?”

Media Hysteria, Gloom & Doom: A Rant

Whether calling it intention, prayer or “manifesting desire” it is a fairly well accepted concept these days that thought – intention — has the power to effect, even create, our reality. While I believe that intention does influence our reality, I think it is not in the obvious manners many might think, or that pop-wisdom promotes…. It is not about visualizing a new bicycle and somehow magically getting one. Uh-uh.

If our thoughts have power to create reality, or the collective form-illusion we agree upon as reality, then these days it would appear that societally we are busy intending destruction – anticipating evil, birthing bad guys. We are, in fact, risking creating the worse-case scenario — assuming that to think otherwise is somehow naïve, ignorant.

A while ago there was a television show being aired called “Jericho.” Currently it can be found through one of the many streaming/on demand venues. Like many such shows since it is about the destruction of the world as we know it — in this case due to a series of mysterious nuclear explosions set in major cities in the US and Europe. The show centers on a small farming town in Kansas. Is this a heartwarming show of hope and survival, about neighbor helping neighbor facing similar troubles in dire times? About inventiveness, how to turn now anachronistic electric-powered machines into useful chicken coops? About clever people pulling together to create a new way of living? About mankind transcending ultimate challenges? About rebuilding civilization and what that might look like within a totally new paradigm? No; of course not. It is about fear, greed, war and man’s inhumanity to man. The credo touted is “get the other guy before he gets you” not “do unto others as you would have them do unto you…”

Some producers, “creative directors,” writers and business heads choosing, again, some more, to highlight primarily the negative, if not only the negative. Why? Where is it proven that this gets more viewers than a script that shows some balance: the generosity, bravery, thoughtfulness, inventiveness and yes, silliness of humanity as well as the fear, cowardice and evil.

What if we are falling into a trap by being so suspicious, wary and skeptical? By listening to the evening news? By tuning in to shows whose main characters are driven by greed and power-grabs, where the action is murder, rape and war. By believing all the gloom, doom and seeming trivialization of evil on TV?

We’ve been taught, haven’t we, that it is – what — unsophisticated? shallow? to “accentuate the positive, ignore the negative” as the old 1940’s song lyrics go. But I believe we are doing ourselves and our world tremendous damage by doing the opposite, by accentuating the negative and not only ignoring the positive but actively repressing it while glorifying virtually any bad news there is to be had on the planet.

When disaster does happen the media is quick to tell us about it and show us the looting and shootings, but not then moving appropriately to the many people helping each other, rescuing pets and children, sharing food and blankets. How is it even possible to know which – the helping or the hindering – is the dominant response?

From my personal experience (i.e., repeatedly being in the dangerous circumstance of being alone and unconscious while having epileptic convulsions), albeit small and in no way “statistically significant,” it is the former — the helping — that predominates. For all those times I have been so vulnerable – whether in New York City, Bangkok, Tahiti, or Vermont – no one has ever physically harmed me or even lifted my wallet. I’ve been taken to hospitals, covered with bypasser’s coats, cradled on a stranger’s lap; called the next day by the waitress who happened to witness my “episode.”

When information and “news” was local the nature of the news was confined to a particular area or region. Newspapers might cover one, maybe three towns. And while national and world news had a page, its information would, literally, be yesterday’s news. The local paper delivered news of weather, local organizations and community events and leaders. Local events were front page headlines. The impact of said news remained local – whether good or devastating. Neighbors helped; they grieved or celebrated with you. One town might have a fire, another the Annual Bazaar, yet another’s major news may be about a new road being built through town. Of critical import: The attention mass of one community was different from another’s.

With the advent of technology and instant communication around the globe, news of events can be known everywhere – its impact visually transmitted and felt. The event’s attendant “reality” is made more dense by the awareness, the thoughts replicated by all the thought-wave patterns emitted almost simultaneously by all the watchers, by all of our attention-units. Not only our collective unconscious, but a collective consciousness is being formed and massed. This attention massing is a powerful force.

This would be serious enough, if the situation stood as neutrally as that. If we were all left to receive the information and process it as individuals. But it doesn’t and we aren’t. There are many interpreters of the world’s events telling us what happened and what to think about it. The negative is too often what is highlighted. On the publicist’s yardstick Sensationalism has risen above Worthiness. “The Media” as it has come to be known, with its “spin,” as well as politicians, corporations and their personnel are all helping to create the effect that is being experienced by so many minds at once, felt in so many guts at once, resonating or repulsing in so many hearts – at once. What are we, in fact, “creating”?

If I have not made my point yet, think of the Twin Towers in NY in 2001 and the unceasingly – for days — repeated photo footage of impact and the destruction. The coverage did not rapidly progress to footage of people helping others, to the food stands, and clean-up crews. No, it numbingly repeated, with dramatic voice-over, flames bursting and bodies falling, with dire predictions of more to come.

Or pictures of war – any war. There is the function of being informed, and there is the act of being invaded, psychically invaded. Then there is the sheer absurdity — remember the media circus that was the trial and subsequent behaviors of O.J. Simpson? Or the Princess of Wales’ death and funeral?

I choose decades-old examples here for two reasons: first, to not perpetrate that which I am protesting, and second but most importantly, to bring to awareness just how long this has been going on. We are and have been being beaten over our psychic heads with disasters – both faux disasters, those sensationalistic non-news events that we are told are in immediate need of our attention, as well as those that are, sadly, too real enough.

Let’s forget News for a moment and get back to what is supposed to pass for “entertainment.” Given the plethora of criminal shows one study has it that by the age of 14, most children in the US will have witnessed over 4,000 “murders,” thanks to “screens” – TV and otherwise. The number enlarges significantly when the category changes to “violent crimes.” And let’s not lightly pass over TV advertising. Which disorder, inadequacy, disease do we have to worry about possibly contracting and (by buying the product) making better this week?

We have been increasingly enculturated and socialized with Fear. As the population has grown, so too have the societal control techniques that use fear and intimidation. While we can always “turn off the tube,” or shut down the screen the truth is that most of us don’t. And one statistic has it that 98{d26b639eb74f8edb8884074db06109d949b84d3d1d14796b516693be64172811} of all U.S. households have a T.V.

I must work hard, here, at being and staying amazed rather than becoming deeply offended at what our culture has produced in the form of the mass media that infuses us with fear. I fear for the minds and hearts and souls of the people, especially the children, plugged into its toxic flow.

If we choose to revere True Beauty we will not be able to give our attention to such news or entertainment, and perhaps we can start to reverse the current.

August 23, 2015

True Beauty and Epilepsy

One of the oldest chronicled disorders, Epilepsy has been steeped in stigma and myth. Those who have it are described as “afflicted” and often face very real forces and forms of discrimination and ridicule. I believe this is due in great part to three basic characteristics of Epilepsy:

The first characteristic is its episodic nature; it remains hidden, “invisible” to others for what can be long periods of time. When a seizure occurs, then, it can feel like a betrayal to both the person having it as well as anyone viewing it. This can erode confidence.

The second is its lack of uniformity: with seizures taking so many forms it is hard to categorize and simplify. To know “for sure” what it looks like, feels like or how it will “present” to use medical parlance. Even in one person’s life his or her seizure type can evolve and change over time. This undercuts predictability.

The third characteristic is its resistance to being known: there is no cure, in 80{d26b639eb74f8edb8884074db06109d949b84d3d1d14796b516693be64172811} of cases there is no known cause (called ‘idiopathic’ epilepsy) and too often medication is only partially effective. Epilepsy refuses to be controlled; it is very mysterious. This can create fear.

Betrayal, unreliablity, unpredictable, mysterious…

These characteristics are, I believe, the primary contributors to epilepsy’s stigma. People distrust what they cannot understand. They don’t like to be fooled (“She was fine just a minute ago!”) or surprised (“It all happened so quickly”) or frightened (“That convulsion was the scariest thing I ever saw; my friend looked positively possessed!”). Further, doctors and parents don’t like to be defeated when they try, repeatedly, to help. As a culture we are uncomfortable with the mysterious. And no one likes to be afraid.

What has all this to do with Beauty or a possible practice of True Beauty in everyday living? Bear with me while I try to share the connection as it occurred for me.

After selling my entrepreneurial business to big biz of corporate America, I had a bit of time on my hands.

It transpired that I came to volunteer with the Epilepsy Foundation of America, serving on their National Board of Directors. Prior to this I’d lived quietly, privately with epilepsy all my life. It was a surprise, therefore, to discover that there was a whole community of people active, interested and educated about epilepsy. A patient advocacy group, even! They actually talked about it! And I had so much to learn about epilepsy, which felt odd; a condition that had so circumscribed my life, my being so out of the loop — not even knowing there was a loop!

It also came as a surprise that I had so much to contribute to this community. Back then the Foundation’s Board was made up mostly of medical practitioners, businessmen and some lawyers. It turned out that I was the first “consumer” — person with epilepsy — to be elected to the board.

I loved my work there. As a representative of the Foundation I traveled around the country as a public speaker, sort of Epilepsy’s “poster girl of success,” to educate others and raise money for various local Foundation affiliates. Unemployment and underemployment are major issues for people with epilepsy. My story of starting a business, working long hard hours, work-related travel, managing and inspiring employees both in-house and across the country — it was a story that flew in the face of the idea that it was difficult to employ a person with epilepsy or work around their issues.

This proved to be an important puzzle piece for me — my public participation in what had been a very private circumstance; public revelation of a private struggle.

Action, not abstraction. Being visible, not invisible. Vocal, not silent.

It was not easy, at first, to find and publicly tell my “real” truth. I came to be able to articulate what I had inherently known: while not pretty, or convenient, and sometimes brutal and deadly, epilepsy nonetheless transfers its own gifts. It can confer a kind of wisdom through its particular perspective. As an alternate way into knowingness, epilepsy can be pretty efficient. To acknowledge this was a significant milestone in my spiritual perspective and development. And I was saying out loud what many others with epilepsy inherently knew. In facing epilepsy we become strong. We are capable. We are not perfect, but who is? We are often sophisticated problem-solvers…we have to be.

In my universe, it revealed the connections as well as the distinctions between Truth and Appearances. And this distinction is a key component of True Beauty. It was through the topic of epilepsy that I was able to make the leap from inner truth to outer connection, between revelation and the dispelling of despair. Around the topic of this ancient and misunderstood disorder I was able to articulate — first for myself, then for others – the integral uselessness of “appearances” in the face of strong self-knowledge.

It may seem obvious, but to the person struggling with the stigma attached to a seizure disorder, it is not at all obvious. Nor does self-knowledge come easily; especially when the doctors don’t have many of the answers for the physical or emotional side of the equation. Do you know that certain types of epilepsy are believed to effect personality? Try that confusing discussion/possibility on for size when you are a hormone-ridden, answer-seeking teen-age girl.

I hope many get it: their assumptions about epilepsy, the appearance of epilepsy need not be its truth, their truth. The eventual truth/outcome. When delivering speeches I would see eyes light up; hope enter in; parents laugh. The dismantling of that assumption, that “automatic pilot” sort of thinking helped create the connection for others, I believe, between Truth, Appearance, and yes — Beauty.

It was humbling to realize that it was in part my story, my experience that held power for others. That to hear me — one of “them” – gave hope and inspired courage. Further, my marketing and communications expertise, garnered over the years in the business world, now allowed me to help the Foundation re-frame and re-tell the story of Epilepsy; undo some of the preconceived notions that have been handed down generation after generation.

Through the experience of having seizures I have been exposed to and learned so much. To name a few: altered states of consciousness that led to deeper understandings; the ephemeral nature of my own existence; confrontation of one’s own fears – real, imagined and a combination of two; the poignant beauty of existence; the hierarchy of importances – personal and otherwise.

The expression of my truth and being as a person with epilepsy helped to dispel stigma, brought new hope and created realizations for others. It brought light, a truth, into a dark and ignored corner. This was, to me, a form of the beautiful. How? It was contributing to harmony, where before there had been discord.

Then, this sharing my life story with others and having it be meaningful to them – what a gift! It got me thinking about how to “universalize” the lessons, about my conviction about Beauty, and how it was present elsewhere in everyday life. Had others thought about this? Written about it?

Circuitous though it may seem, it was my first inkling that Beauty could, indeed, be a practice, like meditation, or running, or…

The nine years at the Epilepsy Foundation gave me back so much more than I gave. Not to be hyperbolic, it transformed my “profane” success in the consumer-goods world into a tool for a more sacred work. I experienced a non-visual expression of Beauty on another sort of canvas. And it was powerful. It was a deeper understanding — and it has led me into what I am now calling The Way of Beauty.

Yahoooooooo!

June 7, 2015

Musings from the Epileptic*

ART037 So, here’s the thing: when I am in it, I don’t know if it is real, or if I am making it up. At least at first. But how long does “at first” last? How long does at first last? See, I just noticed that I typed that twice. I choose not to correct the mistake. I am so good at covering up my seizure-induced confusions from the public eye. Maybe I shouldn’t.

This a.m. I wake up feeling gloomy. beat myself up about it. I am lazy. don’t want to get out of bed. slug-a-bed. Why am I so depressed? How much is it my weak character, how much a come-with of having epilepsy? And isn’t that just a cop-out? Isn’t the essential “I” that is not this body strong enough to overcome this purely physical glitch? Or is it not simply physical? Is there a spiritual, other-dimension aspect to this particular affliction? I suspect the latter. It adds to my sense of hopelessness.

I manage to finally get up, notice the day. get dressed; start some laundry. Need to pee. Keep noticing that I need to pee. That is my first indicator — noticing that I keep forgetting that I need to pee. Living alone my body is my “other,” my witness. Ironic. It is at this point that I start to wonder if I am making things up. Am I being oversensitive? Imagining stuff that isn’t really there? Just having morning spaciness? Experience has taught me to try to override these doubting voices. But it is hard.

I am wandering in circles in the kitchen. I think I should get the hell off, away from that tile floor. My eyes tear up. I am hungry. Which pull is the greater? Fear or hunger? I convince myself that the fear is imaginary and start boiling water for chop-chop eggs. Put bread in toaster, justifying the illegal carbs by the seizure activity I just denied moments ago. Ah, the intricacies of cognitive dissonance! All the time I am waiting for/preparing the food, I am monitoring myself. I take another pill, then am concerned that it might be the wrong kind. I go to another bottle and take another pill. I announce to my empty house: “I am really sick”, and eye the tile floor again.

Now I am in my bed, belly full. Safe. Annoyed. Feeling foolish and interrupted. Apprehensive. Nonproductive. Will these “little seizures” escalate into a biggie? Dunno.

I hate this crap.

This is the stuff that doesn’t make it into the radio interviews.

*I know this is a politically incorrect term these days. I am not an “epileptic;” rather I am a whole person, one who also has a disorder (or is it now okay to say “disease”? I can’t keep up) epilepsy. But on mornings like the one described above, I don’t give a damn. And I am publishing it as I wrote it on that long-ago morning.

May 3, 2015

Beauty Practice – Self Acceptance

What could be more appropriate after discussing the authentic self, than the discussion of practicing self-acceptance? Marianne Williamson says:

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light not our darkness that most frightens us.”

Hmmm.

And I very much agree with what Cormac McCarthy has to say. While speaking of courage, he hits on both awareness of one’s true self, and acceptance of that self (or lacks thereof):

“All courage is a form of constancy. It is always himself that a coward abandons first. After this all other betrayals come.”

It is a phenomenon of a wealthy society that we can even contemplate the notion of self-acceptance. That said:

Self-acceptance is a form of unconditional love. It is lovingly embracing the “needs improvement” and “unsatisfactory” along with the “excellent” and “satisfactory” on our internal report-card.

If we kid ourselves and choose to either believe that “it’s all good” as the saying goes, or conversely that it’s all crap, we are all crap — we are not being authentic with ourselves. We are living in delusion and fooling only ourselves. It is not a productive way to live.

Very few of us do not have our delusions, oh by the way.

On the extreme that tends towards the “it’s all crap” side, the gap between what we might refer to as the realm of the “coulda/shoulda/woulda’s,” the NISTs (refer to last week’s blog), and what one feels capable of, versus what we perceive as actually accomplished can feel great. The subsequent self-disappointment might make self-acceptance a prized achievement rather than a natural “given.” Through this aberrated lens, we rarely accept the self — it can always be somehow more, better, worthier.

At the other extreme, the “it’s all good” stance may birth arrogance and self delusion that can overtake an individual — sort of hiding behind the smiling mask; nothing can ever be wrong! The self is invincible, always right in some way or another. Self acceptance is a given. I like to think that most people really don’t dwell full-time in either of these extremes, but for the most part view their individual internal report card more objectively, aware of their full spectrum of “marks.”

By the way, this review/report card idea in the self-acceptance process is not about bringing up The Judge. We can be such harsh judges of ourselves, can we not? So how is this done truly lovingly and not with harsh judgment?

Be kind. Be kind to yourself. Be the loving parent to your growing self.

Self-acceptance is not about complacency. It is the sister-step in practicing Authenticity. As in all things there is a balance point to be struck; in this case between acceptance and improvement. And it is not a static point, it is often a balancing act — always moving. Acceptance doesn’t mean unchanging, rather to embrace lovingly what you cannot or choose not to change now. Change what you want to when you are able. The rest will have to wait. The balancing act continues.

photo by Lisa Lindahl — photo interpretation: seizure coming on

An example: I accept that I have seizures. Epilepsy. This is a multi-faceted fact that presents obstacles and limitations in many different areas of my life. So I have had to respond in different ways. There are ways I can and have improved my personal universe. There are ways I have not, and in some instances believe I cannot. (There is no cure for epilepsy). There are other items that are still in the gray area: I just don’t know if I have the ability to change/improve them — or I am just not yet ready to confront them. I have not accepted many of the limitations traditionally placed upon people with epilepsy. Some of these are culturally instigated, others medically. My questioning of such “limitations” has caused concern for some people in my family. It has been trial and error, and I have made mistakes. Yet I learned for myself what my limits in this area were, and they too are not static but evolve as circumstances, medications, and seizure cycles change. I take my medication faithfully and deal with the side-effects (not always uncomplainingly). I try to balance personal safety with a certain quality of life. Just when I believe I have achieved a certain satisfactory balance, it can change again. At times this constant challenge feels lonely.

So, how does one acknowledge and respond to: this is my current reality, this is who I am now. How might I move forward? Do I even want to move forward? Is there room for improvement? Do I want to aspire to something more or different?

The responses to the above can form the harmony point between lovingly embracing the critical self-awareness, one’s acceptances and one’s work at self-improvement. It is a dynamic self-acceptance versus a denial as a false form of self-acceptance and blinkered self esteem that, too often, justifies unproductive behaviors and/or situations and relationships.

At one point while contemplating the practice of self-acceptance, something I knew was very important to moving with True Beauty in everyday life and living, I started asking around. How did others think about self-acceptance? Or did they? During this inquiry it was suggested to me that women and girls have a more acute issue with self-acceptance than do males. I’ve done no research to verify this, but I strongly suspect its true. The media in all its forms projects such strong and pervasive ideas and ideals about the feminine. Well, mostly about feminine physical appearance. Much has been written and observed about this over the past few decades; but it has hardly changed. You have only to walk through a high school to know that.

It is hard not to compare and contrast our own appearance with the images out there. We elevate the likes of actresses and reality “stars.” The rest of us women do not have hair & makeup minions fluttering about for two hours before our first appearance into the day. We are not able to airbrush ourselves before leaving the house. Is it any wonder our young women get confused about where their worth originates — in the constancy of character, grace and ability or simply a particular physical appearance?

And then, as one rather stiff-upper-lip sort of person put it, “Well you just do accept yourself, don’t you? What choice do we have?”

Shine on!

To practice acceptance of oneself:

1) Listen to your body and your intuition and notice where you are resisting.

2) Be fully present with the choices that are available. Choose mindfully, with authenticity and compassion.

3) Think of “failure” as another word for “rehearsal.” Trial and error is the way of artists and scientists.

4) Remember: everyone is doing their best from their point of view and level of awareness — including you.

5) Where necessary, forgive. Especially yourself.

So, what role does self-acceptance have in reclaiming True Beauty into our sensibilities and our culture? Again: as within, so without. The more accepting and loving we are of ourselves, the more accepting and compassionate we are liable to be of others.

One of the seldom mentioned keys to the spiritual life is acceptance. Not acceptance of others but of ourselves. So often we focus on what we want to change…lessen our character defects…. What if we are acceptable even in the times we have difficulty accepting ourselves? …The poet Theodore Roethke …tells us: ‘in a dark time, the eye begins to see.’ ” ~ Julia Cameron

These beauties are actually in the onion family

March 29, 2015

Women’s History – Jogbra, another chapter

(The following is a continuation of a blog written on March 1. If it is difficult to follow the story below, it might be helpful to read March 1 first…)

Before Women’s History Month 2015 ends, I thought I’d contribute another chapter in the Jogbra story. So often I get asked to tell this tale. And while the whole history is written, it hasn’t yet been published — too many of us are still living! LOL

early Jockbra - JBI file photo — Early “Jockbra”

Sitting around on my living room floor with Polly at the end of that summer in 1977, I recall brainstorming about what this new invention might mean, what to do next, how to proceed. We dismissed two options right away: sewing the garments ourselves and in effect starting a manufacturing biz (Polly especially was against this, having seen a few such operations in NYC), and selling the product design outright to a bigger company, sure of a difficult/bad deal from double-crossing sharks preying on us naive artsy types. (I was against this, having seen my father go through such a process). Subcontract out the cut & sew part and go into biz ourselves with the sales and marketing end? Then maybe sell it mail-order? Polly was indifferent about this as well. She wanted to design costumes. Business was not her forte. She’d been happy to help me bring the design into reality, but was not prepared to go into a business around it. She was clear.

I was enthusiastic, already marketing in my head — thinking of a new kind of business, a new way of business, a women’s business. Hinda was there for this conversation. Unlike Polly she was as enthusiastic as I was. She had always been athletic; although not a runner, she was into yoga and quite a skier. She got the potential for this product. I looked at her anew. In an aside, I asked Polly if she’d mind if I asked Hinda to join us, officially. She shrugged, saying no, fine, fine.

By women, for women was envisioned as our tag line. We wouldn’t do business like men. We’d be cooperative not competitive, inclusive not exclusive. We weren’t lingerie (said with a sneer), Jock Bra was serious athletic equipment! We’d… we’d… . You can imagine the scene. Naifs.

Earlier in that year, 1977, I had completed my Bachelor’s degree through the University of Vermont’s Evening Division — “Continuing Education” or “Adult Ed” by other names. Also working part-time as an administrator in a not for profit residential treatment program for adolescent drug abusers, “full” time as an artist/artisan (stained glass at that time; it was the 70s after all), taking varied courses at night, and oh yes, I was married. I loved learning/school and was very excited to have been accepted into the University’s Graduate Degree program in Educational Administration. I had started grad classes at the same time Polly and I were designing Jock Bra prototypes.

In retrospect, that period of time was my personal “perfect storm” brewing. By the next summer of 1978 I knew my marriage was over and divorce was on its way. I had no driver’s license. Epilepsy made that difficult at that time. After Polly and Hinda had left Vermont, after the kerfuffle with my brother-in-law, I’d formed a corporation around the Jockbra, and distributed equal shares to Polly and Hinda, too. I figured perhaps my new bra might be a nice little mail-order business on the side to help finance grad school while I found a real job I could walk to, continued with my studies and figured out how to make this new single life work. And frankly, I was frightened. I had been told all my life that if I had a grand mal seizure while alone I could die. Oh, weeeelllll. Stuck up over my desk I had a hand-lettered sign: PERSERVERE

Jockbra-soon-to-become-Jogbra trumped all that, both plans and fears. Well, the fears got suppressed. The plans got re-made. What’s the saying? “Life is what happens while you’re making other plans.”

Hinda was stuck in South Carolina the summer of ’78, so I mailed her the precious prototype. (I was worried that in my chaotic divorcing state it might get lost in the proverbial shuffle, and frankly she had not yet “earned her shares” so to speak). On a bicycle ride one day she noticed a sign for a start-up cut & sew operation. She took them our prototype bra and asked how such a garment might be mass-produced, and what it might cost. Changing the original design somewhat (me going “Yikes! What?”when I found out) they came up with a garment that could be manufactured for a reasonable cost. Hinda’s Dad generously fronted the money for the initial production “run” of the first athletic supporter for women and I opened us up a corporate bank account in Vermont. We were moving forward.

But it seemed in some areas of the country, South Carolina in 1978 among them, “jock” wasn’t such a nice word; and so Jogbra was born. I think 12 dozen were manufactured and sent to me in my Vermont apartment. My living room became the warehouse, my tiny dining room the office. A small ad in a running magazine of the time showed the product and listed my address as the contact point. Let’s remember: this was before computers and websites. The orders started rolling in. OMG. (It is interesting to note that we used that factory for years and, in fact, built our businesses together.)

Meanwhile Hinda’s stay in South Carolina was over. She drove to NYC and stopped in to visit Polly, where she bought the majority of the shares I had issued to Polly. When I learned of this I was surprised. I knew Polly did not want to be active in the company. But sell her shares to Hinda? Later she said Hinda inferred that I was not going forward with the biz, and that cinched it for Pol; she certainly wasn’t going to do it if I wasn’t. But I was. It was not a good way to start our partnership. I wondered what had happened to the “for women by women” and the attendant ethos we had espoused the summer before.

One of the first orders was from Macy’s department store. Only a “sample order” (what was that?”)….How are they packaged the buyer asked. I scrambled to figure out packaging with our new help, an advertising and marketing agency. But this order, among other things, reinforced my thinking re our marketplace: we did not want to sell into department stores. We were athletic equipment, not lingerie; and the sort of game they wanted to play was beyond our ken in those early days. Brilliantly, we had chosen to sell into the independent athletic stores that were springing up everywhere. Many fun and funny stories there about trying to sell a bra to the proverbial jocks who ran those stores. But that’s for later because…

First, of course came financing. Financing? Yikes again. Money for packaging, more fabric, a bit of communication to let the world know we existed — advertising and some p.r. maybe. Somehow I knew to go the Small Business Administration. One thing to be said about the two of us: we weren’t shy about asking questions. Hinda decided that I should write the business plan the SBA said we must have before they could help us get a loan from a bank. “Why me?” I asked. “Because you’re in school and used to writing papers. Just think of this as another paper.” I looked at her to see if she was joking. She wasn’t. The truth was that neither of us had a clue, and she wanted no part of it. At least I had taken an accounting class once. The SBA sent me a many-paged form to fill out and I began. Privately I titled it “Financial Fairytales” because, really, how the hell did I know how many bras we were going to sell in Year 1, Year 2 and Year 3? Or what the production costs would be each year. Or what percentage of sales we’d spend on marketing and advertising? Hell, I’d never even heard the term “CGS” before. So, I made it all up. “Educated guesses?” Maybe. I liked to think.

It was a damn good “paper” and got us our loan. Really, writing a business plan with financials was just an exercise and a test. An exercise to make us think through many aspects that we otherwise might not have, and a test of our intention, sincerity and dedication to our proposal. Pretty smart hoop, actually. (And years later I found myself teaching aspiring entrepreneurs how to write a business plan. Of course.).

Can you believe it? Two inexperienced women with a bra, in Vermont — and the loan officer said yes. I think he was just aghast by our ardent hutzpah. It didn’t hurt that the Vermont SBA had minority quotas to fill for their loan applications, Vermont had very few minorities at the time, and (drum roll) women constituted a minority. Really. Who knew?

A “perfect storm.” Facing a major life change, from a marital partner to a biz partner. Confronting mythical and real fears. So many of my assumptions were being challenged, my life was changing radically, I had to choose between pursuing graduate school and this nascent-but-wildly-growing business. I had to move. I spent one lunch hour finalizing a divorce. I had to petition for my drivers license and learn how to drive. Running, my joy and my coping mechanism for so many years was beginning to fail me (knees blowing out). And then, how to deal with a business partner who, it turned out, I knew not at all.

photo by Lisa Z Lindahl — First promotional T-shirt