Tag Archives: living with epilepsy

#amwriting: the ‘e’ word #epilepsy

As many of my regular readers know, my husband and I share five children, all adults, two of whom have a seizure disorder.

Both my daughter and son were diagnosed with epilepsy when they were well into adulthood. Both have been hospitalized with severe injuries, but while our daughter’s journey with the seizure disorder has been relatively trouble free for the last ten years, our son has not had such luck.

Daughter 1 responds well to the medication and rarely has issues. Son 2 has had trouble getting his medication regulated, and his high stress lifestyle has often interfered with his ability to stay on track.

In conversation, as soon as folks hear the word ‘epilepsy’ they begin armchair prescribing cannabis, as the new cure-all for seizure disorders, and while the CBD end of the cannabis spectrum does have a miraculous effect for some patients, it is like any other medicine—it is not useful for everyone. My children are among those who do not benefit from it.

A ketogenic diet may help, but again, not every type of seizure disorder responds to this diet. However, it doesn’t hurt to try it, and so we are.

Surgery is an option when a cause for the seizures is clear and operable, but for most patients, there is no discernable cause. My children fall into this group, and until a more efficient type of brain scan is available, MRIs and EEGs remain inconclusive.

Epilepsy is caused by a range of conditions that are not well understood, and it is one of the less popular afflictions for research. The way it is treated is to throw medication at it until they happen on one that works, rather like Edison trying to invent the lightbulb.

At times, epilepsy rears its ugly head like Cthulhu rising from the depths, and when that happens life goes sideways for a while. The last two months have been difficult in many ways. I have been unable to focus on creative writing, although writing for this blog has been a lifesaver.

Revisions on Billy Ninefingers (a novel set in the same world as Huw the Bard) are going slowly, although I still hope to publish him in September. The first draft of my new (and as yet unnamed) series, set in the World of Neveyah (Tower of Bones), is on and off—sometimes more off than on.

This is just life, just the way stuff happens.  All is not lost. The creative muse will return as it always does.

Three weeks ago, my son had a partial seizure while cooking, and burned his right hand. He then spent four days in Harborview, the regional burn center for the Pacific Northwest. The burns are situated in such a way they are not good candidates for skin grafts, so they are healing slowly. In the process, I have developed some mad wound care skills. For perhaps another week or so, my son is staying with us as he is right handed and the wounds are in tricky places. Soon, he will be healed enough to tend to his own wounds and will go back to his own home.

The real story is, despite the wounds and temporary setbacks, life has been amazingly good. Healing is progressing. We have spent many hours playing Stardew Valley and sitting on the back porch talking and laughing about everything imaginable. This has been a good experience in ways we have found surprising. We have discovered we are not only family, but we are also friends with so many things in common.

This is why the old saying about clouds and silver linings is true—with every ill wind, something good has come along to offset the bad.

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Filed under Epilepsy, writing

#FlashFictionFriday: Tomorrow will be better

Morning came

Along with the bandages and healing,

Along with your frustration and helplessness.

Morning came

And I, as your mother, tended your wounds.

You didn’t ask for this burden.

You didn’t do anything wrong.

You didn’t cause epilepsy.

Tomorrow will be better.

Tomorrow your wounds will be healed

Even if your ego isn’t.


Tomorrow Will Be Better, © Connie J. Jasperson 2017, All Rights Reserved

Photo credit: After a great sun rise, Photographer: Simon Eugster, SSA CCA 3.0 Licence: {{GFDL}} via Wikimedia Commons

If you or a loved one are suffering from a seizure disorder, the Epilepsy Foundation has resources for you http://www.epilepsy.com/

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Filed under #FlashFictionFriday, Epilepsy, Poetry

#epilepsy: Life in the Fast Lane

Albert Bierstadt - Autumn Landscape PD|100 via Wikimedia Commons

Albert Bierstadt – Autumn Landscape PD|100 via Wikimedia Commons

We have two adult children with epilepsy. Both were adults when they had their first seizures, with no prior warning signs.

Our daughter’s first serious seizure was at the age of 29. She has only been hospitalized once with serious injuries, and her medication controls her seizures well. She doesn’t like that she has it, but it doesn’t rule her life, and only rarely causes her trouble.

For our son, it hasn’t been that easy. He was 32 when he began having seizures. He has had more difficulty with his, both in accepting it and in getting it under control. Since the first major seizure, he has woken up in the hospital with serious injuries many times, not knowing how he got there.

Two weeks ago, our son had a breakthrough seizure and fell in a concrete parking lot, fracturing his skull. He had a severe concussion, an epidural hematoma, and lost a liter of blood.

This son is a software engineer and an entrepreneur. He was employed by Amazon for ten years, and was well compensated during his tenure there. He had just started his own company, writing software. He was completely focused on this, and was working 12 to 16 hour days, and getting little sleep, which is very bad for him.

But being who he is, he didn’t realize he was courting disaster.

We live two hours south of where this son lives. We got the phone call at 4:30 pm and threw our clothes into suitcases. Running out the door, we called a hotel near the hospital, and made the nerve-wracking trip up Interstate 5 to Redmond, Washington.

During the harrowing journey north, we discussed his possible long-term care, wondering how he could survive such a terrible injury with his intellect intact, wondering how we could care for him if his motor skills were too severely compromised.

But in a four-hour surgery, a wonderful neurosurgeon not only saved his life, but saved his quality of life. He emerged from the experience with no brain damage, and no loss of motor skills.

Our son’s head-injury was the same sort of thing that killed actors Ben Woolf and  Natasha Richardson. When you look at the way head head-injuries can kill otherwise healthy people, our son’s recovery is a miracle for which we are grateful.

Something intriguing happened with this incident. Our son has embraced life in a way he never has before. He woke up from the surgery in an incredibly different frame of mind.

Instead of wondering why this wretched condition has happened to him and focusing on the negativity of his situation, he is now looking at his life and appreciating it in a way he had not really done before.

When he left the hospital this time, his epilepsy was just something he has to deal with sometimes, and the rest of the time his life is good. His spirits are high and his recovery has been nothing short of miraculous.

If you couldn’t see the large wound on his head and the long, curving line of  stitches, reminiscent of a baseball seam in the way the long scar curves around his temple, you would never know he had undergone brain surgery only 12 days ago.

He is full of energy and ambition, and though he does tire easily, he will soon be back on track and moving forward with his current project which he intends to have on the market before January.

Sometimes, we find ourselves going for a spin in the blender of life. We never know what will happen next, and we have no control over how life affects us. But through all of this, the community of our friends supported us, and faith carried us through the dark hours when we didn’t know what his future would be.

There is so much worse out there–things that make this epilepsy thing pale in comparison. We are praying for a dear friend in Australia whose young daughter is fighting for her life, dealing with terrible complications of flu-b, necrotizing myositis. Her prognosis is grave, and  I know her parents are living in that land of fear and disbelief that I lived in for 24 hours.

We are supporting another friend here in the US, who is undergoing yet another surgery for kidney stones. What we have been through was scary, no doubt about it, but thanks to a wonderful neurosurgeon, it was nothing in the face of these ongoing life and death battles.

Epilepsy is a bitch, but it doesn’t have to rule our lives. Seizure incidents are inconvenient, and yes, we know they will occur when we least expect them. They can and will have a seriously negative impact on us. We know that the next time may not have such a good outcome but we can’t let fear ruin the joy and beauty that we have today.

The real news is not that our children have epilepsy–it is what happens the rest of the time.

We have five adult children with great careers and bright futures, two of whom also happen to have epilepsy.

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Filed under Epilepsy, Humor, Uncategorized, writing

Nurturing the Muse

photo ©Leah Reindl 2014 used by permission

photo ©Leah Reindl 2014 used by permission

I come from a family whose creative muse is frequently expressed in music or in art. Musicians and artists dot the landscape of the old family tree. So far as I know, other than my daughter Leah, I am the only one who writes novels, but it may be that I am the only one who ever had the time to spend on such an endeavor.

When I watch children at play, I see the creativity that all musicians and artists know, that wonderful sense of “Ah ha! This is fun!” that comes with making something that exists only to bring pleasure to those who hear or see it. I see this sense of “I can do it!” in all the children, but by the time they are teenagers, much of that joy in creativity has been trained out of them. I wonder why and how it happens.

When I was young and working at dead-end jobs, I would come home and while my children did their homework or played, I would write, draw, or play the guitar. It was selfish, yes–in that it gave me pleasure. But it was not selfish, as it didn’t take me out of their world, and was something we could share. It taught them that they could take the time to be creative.

If there is any advice I would give young parents, it is to be creative in the presence of your children. You go to work every day, and by that you are teaching them that one must earn a living, yes, but the reward of earning that living is a life of love and creativity.

Some people will say bitterly that their job has burned all their energy and creativity from them. I say this is not necessarily so–you must take the time and energy you expend on hating your circumstances, and convert it into something creative. It’s amazing how many people I know who tell me they aren’t creative, but they doodle the most amazing  little pictures on the handouts during those requisite boring meetings-to-nowhere that we all endure in Corporate America.

That is creativity trying to get out.

The reason children are so creative is that they don’t do it for other people, they are doing it solely for the fun of it. Get out the crayons and a blank sheet of paper for a child who hasn’t been to school yet, and watch what happens. Add old magazines, round-end scissors, and mix up some flour & water paste, and the possibilities are endless. But once that child gets into a social environment where he begins to feel less talented than the child next to him, he shuts that creativity down.

science of relationships dot comInside every adult at the water cooler is kindergartner with a picture to draw, a song to sing, or a story to tell. Somewhere along the line, they began to fear they weren’t good enough and put it aside. Soon they have an “I can’t do it” attitude, because they fear failure and embarrassment. They have forgotten the joy of making a good, creative mess. They don’t remember how they learned as much from the failures as they did from the successes.

Don’t let the fact you have no money stand in your way. It takes very little money to draw a picture, or to write a story. You don’t need an expensive computer program–all you need is a pencil and paper.  And music?  You don’t need to play an instrument to sing. If you always wanted music lessons but couldn’t afford them, a great way to learn is to join a community choir. It’s free, and takes a little time away from your TV, but it is a way to jumpstart your joy of making music.

Our children are all artistic and creative in the most amazing (to me) ways, and I think that is because I never stopped making art or music.  They all sing or play instruments, or create art. Our older son, Billy, and youngest daughter, Meg, are working musicians. Billy is a drummer in a band with my ex-husband and my brother. Meg is a young mother and a working musician with several mp3s to her credit. If you are curious, here is her Facebook page where you can hear her work: Meg is Singing.

Meg and Billy are both incredible musicians, playing the drums, the guitar, keyboards, and in Meg’s case, the flute. Music is their passion. Son Dan is a guitar virtuoso, but he plays for his own pleasure. He is an incredible sports photographer, and his work can be seen here: SpotKazu

Christy and Leah express their art in other ways. Christy is an engineer who deeply loves her craft, and brings her sense of beauty into her home, designing an environment that is both serene and filled with color. Leah is an artist, one of her pictures can be seen at the top of this page, and a hair-dresser. She loves her craft as much as Christy does hers. They go to work, and art is expressed in their daily lives, enriching the lives of their children.

This is why I am and have always been a happy person despite the bumps and hardships of life–I did what I had to do to put food on the table, but I played and sang and wrote poems and goofy stories in my free time. My children were my audience and my co-creators. My husband’s children were raised in the same sort of environment (he is a trumpet player and she is an actress) and all 5 of our kids are sheer genius to me. They far outstrip me with their talents and abilities, and with their drive and ambition.

Tower of Bones Trailer, Music by MEG

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Filed under blogging, Books, Fantasy, Humor, Literature, Music, Publishing, Self Publishing, Spirituality, writer, writing

Flung Poo, or the Tao of Fantasy

fire MH900370240What the heck is it with this particular thread in my personal time stream?

Last week my stove went mad and tried to burn down my house. The self-cleaning function went berserk and my husband had to shut it off at the breaker as it wouldn’t shut off on its own. That was the last straw for that particular appliance. We decided to bite the bullet and raid the savings to purchase a fancy new one, with a convection oven and everything.

This week my son had another tonic-clonic seizure and ended up in the hospital, but he’s home and doing well again. This time he was taking his meds faithfully, but they need adjusting, so we are working with that. In the meantime I am staying at his house north of Seattle off and on until he’s back to feeling like being on his own again. So no driving for Dan, which is a bit difficult, but not impossible.

The republicans in the United States Congress went off their meds and made decisions that put my husband partially out of work. Heck, no worries, we still had a couple bucks in our savings after the stove, so it’s all good. (Bastards.)

He doesn’t work for them, but his job is federally funded, so there you go.  Well of course CONGRESS will still be paid, so no worries, struggling homeowner! This agony must be happening for some good reason…after all, reasonable people would never…oh, right. Never mind.

Between  the conservative  crack-pots in the US Congress and the twists and turns of fickle fate, I need an escape! Boy, am I grateful to have so many affordable and great indie books  to read and a great tale of my own to write!

children of the elementi ceri clarkOne of my all-time favorites was re-released this week: Children of the Elementi by UK author Ceri Clark.

The Blurb:

From the ashes of an ancient empire, five must save the future. 

Jake: Last in line to the Elementi High King throne, sent through time and space to be brought up in an alien world, he has no knowledge of his past. 

Mirim: As the caretaker of the mysterious Citadel which hosts the dying crystal mind of the Matrix, her air power is the only link to the old world. 

Kiera: A Romani foundling with growing powers over nature, she is searching for a better life away from her criminal past. 

They must find the other two heirs and reunite all their elemental powers over earth, air, fire, and water together with the Matrix to defeat the Empire that conquered their parents. 

With a fire demon on his trail, can Jake bring together the last of the Elementi in time?

meteorite_bombardment via www dot indiana dot eduOh yeah!  Grandma’s all about the magic! I loved it the first time I read it, and I’m reading it again!

There is nothing like the zen of a good book in my kindle, and a cozy corner of the sofa to curl up and escape the chunks of falling sky.

I’ve been around this world for a long while. I know everything will right itself and we’ll all be back on track: the oven, my son, and the US government. Life is amazing and when it’s all good, its awesome, so I’ll just sit here with my glass half full, reading a good book and ignoring the things that are transient in the overall scheme of things.

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Filed under Books, Epilepsy, Fantasy, Humor, Literature, Uncategorized, Vegan, writer, writing

Java and Imaginary Heroes

EspressoOnce again I am preparing to get in the car and trundle up the highway. Going north to Snohomish.  Gotta love that town!  They have a great new coffee shop, Rock City Cafe, where the owner roasts the day’s coffee every morning. I like to go there and write in the evenings.

As a true northwesterner, I love the artisan coffees we have available all up and down the Puget Sound.  When I am in Olympia, I go to Batdorf and Bronson coffee roasters for the ambiance and the brew.

The hard part of all this traveling is being away from my home and my husband. But, as with everything, we are committed to helping our kids as well as we can.

We have a Blended Family, three from my previous marriages and two from his. Together we have three daughters and two sons. Daughter 1 is 39, Daughter 2 is also 39, Son 3 is 37, Son 4 is 35, and Daughter 5 is 29. All but Son 4 have provided us with lovely grandchildren, two of whom are providing us with great-grandchildren.

Spike-wavesOur kids don’t need monetary help, but, as I have written before, two of them have epilepsy. The oldest by 3 months, Daughter 1, has seizures that have only once progressed to the Tonic Clonic stage.  Hers are more a matter of her going away for 3 to 4 minutes and then picking up right where she left off.  Her new meds are working perfectly with no allergic reactions, and if her EEG continues to look good, she will be able to resume driving in August. But right now, she needs help getting around as public transit does work well for where she needs to go. I go north every other week for 3 days and babysit her 6yr old and try not to be the pain-in-the-arse mother-in-law.

Son 4 is unmarried. He has seizures that manifest themselves in the Tonic Clonic form. Since his last episode he is doing really well.  The fact is, he doesn’t have them if he simply takes his meds. He has them if he doesn’t.

He is on board with his neurologist and is taking his meds.  His EEG looks good too! He has excellent public transportation where he lives, and is well enough employed he could take a cab to work if he chose to. I only need to drive him when it is something complicated.

We are fortunate to live in a time when the medical community has achieved some progress in both understanding this array of conditions we call epilepsy. My family is fortunate that there are effective medicines they can take that don’t turn them stupid, and that they aren’t allergic to.

We know this condition that two of my children share is from their father’s side, as our other 3 children don’t show any symptoms. Their father’s side of the family was quite secretive about some things, and with good reason. As a society we are only now emerging from the Dark Ages when it comes to epilepsy, just within the last 20 years.

Even though I hate the drive, I love being needed. Daughters 2 and 5 and Son 3 don’t need help, so my participation in their lives is by invitation only. I respect that, and encourage it, as I have my own life, and know what it is like. Nevertheless, when your children are well-grown and living productive adult lives it is easy to lose that feeling of being connected to them. That can devolve into a feeling of loneliness and self-pity.

I am so NOT that mama.

In my early twenties I dealt with in-laws who couldn’t let go, and who made my life a misery, so I could never do that to my sons-in-law.

My Coffee Cup © cjjasp 2013Fortunately for them, I have my imaginary friends, and my fantasy life so I don’t really have time to hang around moping and feeling neglected.  The minute someone comes home to take The Boy off grandma’s hands, I am out the door!

Grandma has a coffee bar to go to, and four hunky, although quite imaginary, men who need to be told what to do! Leave the door unlocked, she’ll be staggering in about the time they shut the place down for the night.

Yes.

I’m THAT kind of grandma.

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Filed under Adventure, Books, Dragon Age, Epilepsy, Fantasy, Humor, Literature, writing

Trains That go Bump in the Night

Train_wreck_at_Montparnasse_1895

Life is a rolling train wreck sometimes.

I think I write for the same reasons that I read.

I’m an escape artist.

I have two adult children with epilepsy, and they frequently face challenges that would daunt the average person.  They didn’t ask for it–they just have it.

Oddly enough, although the ‘e’ word still rears it’s ugly head and we sometime spend long hours in hospitals, epilepsy is the least of the worries.  When you throw into the mix several other loved ones who are dealing with varying stages of meth addiction, your family will occasionally have a train wreck.

When the addict went to jail I felt joy–joy that he was out of the gutter and in a dry place where they feed him and supply him with his insulin, and his violent, hateful self was locked away from me.

I’m a rotten sister.

I’m no longer buying into the insidious guilt trip that the addicts are SO good at pushing on us. I no longer allow him to bleed me dry of money and in November of 2012  I called BS on his protestations of innocence.  His attempts to make the rest of us feel guilty because we never devolved into gutter-dwelling crack-hos no longer have the desired effect on me. I told him that I would purchase his insulin, but that was all I would buy. I do love the wonderful boy he used to be before meth destroyed him, and I don’t want him to die. So that day in November, I paid for his insulin at the pharmacy. His nasty attitude was such that I felt he could pick it up himself.

That didn’t play to his plans at all. He couldn’t wheedle cigarettes or any other outlays of cash from me.  I was sent a text message that referred to me in the most vile of terms. He hasn’t called me since. According to the local grapevine, he has cut me off–I am no longer a member of his family.

Neither is his son, for the same reasons.

When he was released from jail last week, phone calls from him to others in the family demonstrated that it’s business as usual for him. I feared that the threats and cajolery, lies and promises would begin again, but so far he hasn’t called me. Every member of the family who remains in communication with this creature of the night is poisoned by his touch. You never know what phone call to answer and what to ignore, because once he figures out that you won’t answer when your caller ID says he is calling, he uses other people’s phones.

Let the celebrations begin! Since he cut me off, I have not had to pay for his insulin, which is not cheap. Where he is getting it, I don’t know. He is still alive, and I haven’t bought him any since November.

Thus it is that I immerse myself in fantasy worlds and my husband spends his free time gardening. We are united in our efforts to avoid dealing with the addicts.

Addicts have NO gratitude. Don’t expect it, they don’t have it. All they have is a bottomless need and a burning envy. The addict desires to own your possessions but not to enjoy them the way you enjoy them.  They will use them and give them away in exchange for drugs or position within their clan of using ‘friends’. The user feels completely separate from his family. The user will hate you for not being a fellow user, but though they despise you, they will use you until you are an empty husk.

Princess of Quite a Lot by Mary Englebreit

Princess of Quite a Lot by Mary Engelbreit

I am in so many ways a princess of quite a lot, in a completely Mary Engelbreit way! Having a train wreck in the family really helps to underscore what is true and positive, what is real and important. It underscores the love that binds us and also breaks us.

I am grateful for the fact that my home is a calm, pleasant little castle; 1100 square feet of modest suburban serenity. My husband and I worked hard for this tiny bungalow, and we are a bit house-proud in that we maintain it well. I am grateful that my children have good, happy lives.  I am grateful for my beautiful grandchildren.

Even when the sound of grinding metal alerts me to the fact that another train has gone bump in the night, I am grateful for the truth of my real treasure–love. Yes, it is a deadly weapon and can be used against me, and it has been used to cut my heart out, but nonetheless I am grateful for it.

I am not alone in living with the wreckage of this devastating, evil drug. Nearly every family in my county has been touched by it.  The schools are filled with children whose lives are forever tagged with the label ‘children of meth’. Society looks down on them and turns away, fearing their misery is contagious. At Christmas, polite society buys a teddy bear  or a Christmas basket for the annual “Toys for Tots” campaign, but what about the rest of the year? The problem is so huge, so overwhelming that the Washington State Department of Social and Health Services can’t even begin to cope with it.

It falls back on the rest of us to do what we can for the affected children in our own family, and hope for the best when it comes to society at large.

Gratitude is my wealth.

Living in my fantasy world of make-believe is my refuge, and writing about it is my liberation. Real life I take one day at a time, and I remain grateful.

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Filed under Battles, Books, Epilepsy, Humor, Literature, writer, writing

Parsifal, Wagner, and the Muse

Parisfal - Creator - Hermann Hendrich PD-Art Wikimedia CommonsThings are back to normal here at La Casa del Jasperson–at least, as normal as the interior of a spinning blender ever is. I strive to create a zen-like home to compensate for the strange detours life takes us on. The way my creative mind works, I need to have an orderly environment or I can’t focus on my work.

Epilepsy is disorderly in the extreme! Dealing with hospitals and life-changing events takes a toll on one’s creativity. Worrying that the new medicine won’t work, or your loved one won’t be able to tolerate the poison is terribly stressful. Thus, despite the fact that I brought my lap-top and spent the same number of hours staring at the screen this last week, I accomplished very little, other than taking my main characters a few steps closer to their doom.  I managed only 3000 words for seven days of writing.

But that changed yesterday when I managed to write 1200 words in one productive hour. The reason my hour was so productive is this—> Three weeks ago, before life took the side-trip, I was suffering from a bout of writer’s block.

I’ve always known what was going to happen with this tale, but I was writing it by the seat of my pants, as usual! SO in desperation, two weeks ago I made a 3000 word outline of where I wanted the story to go, right down to the epilogue. Immediately, I was able to get the story moving again.

I know!  It’s genius! I took my own advice!

During this week of worry and stress, I spent a lot of time out on Wikimedia Creative Commons looking at some of the greatest art ever collected. It is humbling to realize that these artists saw no great rewards for their work, in fact they were barely able to eke out a living at it. I came across the picture that graces todays post, Parsifal, by Hermann Hendrich.  The castle in the background is exactly the sort of place my characters have found themselves. The fir trees and the remoteness of this picture gave a form to my idea, and I was more easily able to create the story of what happens next.

The interesting thing is, Hendrich got his imagination jump started by having seen the Wagnerian opera, Tannhäuser(YouTube link here!)

Go figure–an artistic type whose muse is fired up by big, loud, epic music!  Of course I was captivated.  The creative process that others experience is as interesting to me as is their final, amazing product.

Today, it is  7:28 a.m. on an early spring Sunday.  I am listening to loud German opera overtures via YouTube and mentally preparing to get 3000 or more words written today.

So as the world here in Olympia (the navel of the universe) gets back to normal, all will end well for my heroes…or will it…heh heh….

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The ‘e’ word, part 2

MSClipArt MP900390083.JPG RF PDEpilepsy.

My oldest daughter had a grand mal seizure when she was 26 years old, and has not had any issues since. She also deals with obsessive compulsive disorder, and is doing well because she is on a good treatment regimen for her conditions.  she is a beautiful, happy woman of 39, with a 6-year old child (The Boy who frequently appears in this column.) Early on, Daughter 1 decided to face her problem and deal with it appropriately. The Boy will be her only child, as she had to go off her meds for that year in order to have a healthy child, and she isn’t going to chance that again.

Adult Onset of Epilepsy with no discernible physical cause is more common than I once thought, though it is still rather rare. It is hard to find information on it. Many adult seizures are caused by tumors, alcohol and drug abuse, or aneurysms, and frequently these can be cured.

However, many times there is NO PHYSICAL CAUSE that is discernible via MRI  or EEG. This is the case in two of my children.

My son, who shares the same father with Daughter 1, always showed the same intensity of thought and purpose, combined with obsessing that his father and his sister had.  He recognized early on that his OCD was crippling him, and sought treatment for it.

He will be 35 in a month, and has only had his seizure disorder for 18 months.  He had trouble accepting it, refusing to believe it could occur again, since his sister had only had the one seizure that we knew of. Then, when he was forced to see that he had “a problem with seizures” he believed he could cure it with the proper diet, and exercise. When that notion was proven wrong, he at last went on the meds that his doctors prescribed, and he went 10 months with no seizures.

Because he is an analytical man, he wanted to see if the meds were working, and went off them for 5 days, and had 3 grand mal seizures and at least 1 minor seizure in 2 days. Fortunately, he was in the hospital, and they were able to get him on a good regimen for his meds.

Now he has faced the reality that he has epilepsy for no apparent reason, and there is no way to cure it. To my everlasting relief, he is making good decisions and going forward with life, instead of letting his epilepsy rule him.

On occasion, a physical cause can be found for the random seizures that characterize this disorder, but frequently no cause can be found. In my children’s case, no root cause can be found, but their father’s side of the family has had some history with random aneurysms and other odd occurrences, such as clinical Obsessive Compulsive Disorder.  Medication treats the symptoms, but also frequently has other effect that are not so desirable.

Thus, the dilemma that all people who must take these medicines face.

As an author, I have the perfect positive escape for the stressful things in my life.  I write, I play games, I read books, and I reorganize my spoon collection–I stay busy. My chosen career is one I can carry with me, so when a family member is having a crisis, I can pack up the laptop and go to the rescue for however long it takes to help them work through the problem.

For a Vegan, this is an adventure, indeed! I have found ways to travel and dine on the road without having to go hungry.

My advice to those living with epilepsy still stands.  Take the poison, and live the life you are given to its fullest.  Deal with the problems when they arise and put them behind you. Happiness is a state of mind that must be cultivated.

Many people spend hours thinking about where they went wrong, and reinforcing the negative thoughts.  This makes them negative, unhappy people!

To be happy, one must deliberately cultivate the positive things that are ALSO happening in their life, and give them more importance than the negative. Make your face smile, even when you aren’t being watched and you might be surprised at how much better you feel!

We all have random bad things that pop in and out of our lives. We live in a sometimes hard world, but we have this wonderful, glorious opportunity to see the real beauty of the world around us.

Grab it, and don’t let go!

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Filed under Battles, Epilepsy, Humor, Literature, Vegan, writing

The ‘e’ word

MP900049975Letting go is never easy.

You are grown up now, you’re a big boy.  You make your decisions, right or wrong.

You’re thirty-five years old.

You have a seizure disorder.  It’s okay to call it epilepsy. It’s okay to say the ‘e’ word. It’s not like we are naming Voldemort. Nothing caused it. Nothing will cure it. It will come and go, and yes it’s a bastard to deal with, but we deal with it. When you take your medicine, the symptoms are controlled.  When you don’t, they are not.

You have this epilepsy thing and you have trouble accepting it, but I believe in you. Nothing has changed, except you have this problem sometimes.

Don’t choose to live your life looking at what you don’t have–so caught up in where things went wrong that you can’t see where they went right.

Life is so beautiful.

Your life is out there, waiting for you to claim it, waiting for you to wrap your arms around it and embrace it.

Life is good.  Don’t become a small, angry person just because things aren’t perfect. Don’t build walls around the you that I love so much. Don’t hide behind stubborn anger, because life doesn’t care if you’re mad or not. Life goes on, and the only way to live, REALLY live is to grab it, and learn to love the life that exists despite the ugly bits.

It’s the contrast of the good and the bad that makes the good in life so beautiful.

Embrace every minute and see the beauty around you. Live in the moment, because you only get one moment, ever–and that moment is now.

Don’t let the ‘e’ word steal your “now.”

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Filed under Battles, Literature, writing