Category Archives: Epilepsy

June 10, 2013 · 7:40 am

Java and Imaginary Heroes

Once 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.

Our 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.

Fortunately 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

Tagged as adventure, batdorf and bronson, battles, blended family, coffee roasters, fantasy, fiction, humor, literature, living with epilepsy, writing

May 8, 2013 · 7:28 pm

The Knight Returns

As always, I have five or six projects going at once. I’m in the editing process on Mountains of the Moon, a Tower of Bones prequel. I’m getting a sci-fi short-story ready for submission to Analog. If they reject it, I will publish it as a novella.

And now I am doing revisions on Huw The Bard, and writing Billy Ninefingers, I find myself writing a new opening vignette for The Last Good Knight. The revised edition will have several new chapters, one of which was completed only a few days ago. It will not have the prologue, nor will it have the chapter that is a long info-dump. They tell a lot, but they are mistakes made by a new author, and they do the book no good.

I know I’ve said it before, but I’m in love with my characters. And of all my characters, Julian Lackland holds a special place. He was my first real hero, my first slightly-flawed-but-nonetheless-still-perfect hero.

This is the issue: we as authors want readers to see our literary vision with the same clarity as we see it. The problem with that is our readers will NEVER see our vision as we do. They will see it through their own eyes. This means our task is to enable them to visualize the story and the characters in the way that is most pleasing to the reader.

Folks don’t want info–they want action.

So I’m going to give it to them. Heh-heh. Good Luck, Lackland!

Fortunately, I am an indie and I have the ability to unpublish a book that isn’t working as it currently stands, and do it as it should have been done in the first place had I not been so new at this business.

Today I hit the road north again, this time to Seattle. I will be working in a Starbucks in the South Lake Union part of town, in a building that houses Amazon. Afterward I will meet my son there and we’ll go to a vegan restaurant, where he’ll pretend to enjoy the food (because he loves his mother) and we’ll have a good time. All the while, all three tales, Huw the Bard, Billy Ninefingers, and Julian Lackland will be rolling around in my head, and I will attempt to carry a conversation on as if I weren’t a raving lunatic, obsessed with my imaginary friends.

He’s used to it.

Tomorrow, while my son is having oral surgery, I will be in the waiting room, devising new tortures for old friends. If it goes long enough, I might finish another vignette!

Sorry son, Mama’s a writer. Reality isn’t her best thing.

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Filed under Adventure, Epilepsy, Fantasy, Humor, Literature, Romance, Swashbuckling, Vegan, writing

Tagged as Art, fantasy, fiction, humor, knights, literature, vegan lifestyle, writing

April 5, 2013 · 8:32 pm

The Wheels on the Bus

Ah spring! Once again I am traveling the grand Highways of Life, surfing the net from hospital cafeterias and meeting some of the nicest, most caring people in the world.

As I’ve written before, two of my children suffer from Adult Onset of Epilepsy. Most of my time has lately been divided between Seattle and Snohomish, trying to help them cope and then returning to my home south of Olympia.

I spend a LOT of time on the road. I take my husbands car for these long trips, as my 1999 Suzuki Swift (known locally as ‘the Grape’ because of its grapey-blue color) is not that good on the freeway. It’s so small that it gets blown around a lot by semi-trucks and mini-vans.

This time the ‘e’ word has struck my oldest daughter . Her seizures manifest themselves differently than her brother’s. Dan goes from being just fine to Tonic Clonic without warning. His are currently being managed well with proper meds.

Leah has only had one Tonic Clonic event and that was in 2000, but she has once again begun having episodes where she ‘just goes away’ for 3 or 4 minutes. She has no memory of these mini events. They are Complex Partial Seizures, and are quite random in the way they strike her.

They share the same father, and there are indications that this may be something that his family has dealt with in the past on his mother’s side. The problem is, they emigrated to the US from Norway in the 1920s, and all the ones who would know anything are dead.

Chances are they would not have been willing to discuss it, were they still alive. The stigma of epilepsy was, at one time, enough to keep members of an epileptic’s family locked in a code of silence. In the public mind, epilepsy was intricately bound up in a knot with mental illness and mental retardation. From the 1920’s through the 1990’s, just having a family member with one of these conditions was enough to prevent you from getting a white-collar job, no matter what your education and qualifications. It is only in the last decade that the public has begun to be educated in regard to ALL of these conditions.

In many ways, we are still fighting these sorts of battles, breaking down the stigmas attached to these illnesses and conditions. It is illegal to discriminate against a person in hiring just because they disclose that they have an illness or disorder, but who knows what will affect the person’s chances at a job interview?

Fortunately my children are employed well. Dan is a software engineer and Leah is a hair stylist, and owns her own business. Dan’s employer is absolutely awesome. He’s been there 10 years and is very happy. His employer has many employee-support programs, and they treat their employees like family.

And so, the saga continues. The vegan hits the road, wondering if she will be forced to starve or if there will be food she can eat there, wondering how her kids are holding up under the pressure of dealing with new meds and medical bills.

Yet, no matter what, they always seem to manage, and yes, sometimes they need my help with logistics or hospital stuff, but most of the time they just handle what life throws at them.

And this makes me rather productive–I have finished writing the first draft of Mountains of the Moon, and am doing revisions. It has an ending and everything.

I have 48,000 words written on Billy Ninefingers. I have the beginning, and I have the end, he just needs the middle filled out!

I am also doing a complete rewrite of my Galahad tale.

So the wheels on the bus go round and round and I keep rolling down the highway, but I say to heck with reality, I’m an author. Escape is my middle name!

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

March 25, 2013 · 7:43 pm

Trains That go Bump in the Night

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

Tagged as battles, family, humor, literature, living with epilepsy, meth addiction, writing

February 28, 2013 · 10:12 pm

The ‘e’ word, part 2

MSClipArt MP900390083.JPG RF PD Epilepsy.

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!