Tag: life and the paths we’ve taken

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Life in the Fast Lane

As readers of my author blog, Life in the Realm of Fantasy, 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 anything that may help.

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. This summer was difficult in many ways, making me unable to focus on my own creative writing. Having deadlines and writing posts for various blogs on the technical aspects of writing was my lifeline, keeping me connected to the craft.

On June 13th, my son had a seizure while cooking, and severely burned his right hand. He then spent four days in Harborview, the regional burn center for the Pacific Northwest. The burns were situated in such a way they were not good candidates for skin grafts, so they healed slowly, over the next two months. In the process, I developed some mad wound care skills.

Now my son is healed, with new meds the seizures have abated, and he is back in his own home, getting on with school and a new direction in his career. This was just life, just the way stuff happens. It wasn’t a hurricane like Texas just experienced. We suffered no widespread devastation, and no one died. The creative muse has returned to me, as it always does.

I was home all last week, and still, my house is trashed. A mountain of dirty laundry lurks in the hall by the washer. Every counter-top in the kitchen has some item waiting to be put away. Two weeks ago, sand from the beach made the journey home in our clothes. Despite having vacuumed several times since then, the carpet needs a good shampooing or replacing, but that’s another story.

My editor’s hat is firmly on, and I am editing for Myrddin author, Carlie M.A. Cullen, a creative fairy tale that will be an amazing book. Revisions on my own work, Billy Ninefingers (a novel set in the same world as Huw the Bard) are progressing well. The first draft of my new series, set in the World of Neveyah (Tower of Bones), is on and off—sometimes more off than on, but each writing session sees progress.

Events in my family during May, June, and most of July temporarily stalled my creative mind. Many projects and plans fell by the way, but there was no other choice. Now, with my son on the mend and back in his own home, I am back to work. No more mornings spending two hours doing wound care, no trips to the burn center in Seattle for follow-up—all that is over and done with.

No cooking and cleaning for an extra person, no trying to find ways to entertain a bored, unwilling houseguest.

Now I am free to get up at 5:30 a.m. and edit until 10:00 or so. Then, when my ability to think critically is exhausted, I have the luxury of writing until noon. If I feel so inclined, I can do a bit of putting away, and maybe a little housework, but then I can sit and write again. This house will never be clean, but my family is once again on track and doing well, my ability to write has returned, and I am privileged to be an editor for Myrddin. This is where I get to read the best work before anyone else and hobnob with the authors.

Every life has challenges, whether it is epilepsy or hurricanes. The west is on fire, forests and grasslands burning and displacing people. Hurricanes are devastating the South. If you feel moved to donate to Hurricane or fire relief but don’t know a good, reliable organization, or for whatever reason choose not to donate to the Red Cross, you can make a donation through:

the ELCA Hurricane Relief website at https://community.elca.org/ushurricanerelief.

Wildfire Relief Fund at: http://wildfirerelieffund.org/

Your dollars and prayers will make a difference, far more than donations of second-hand goods and stuffed animals. What the displaced people are in desperate need of now is food and shelter, which your charitable donations of cash will give them.

Despite the terrible things we sometimes must deal with, life is good. The real task is to not let the bad days destroy all that is good.

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Connie J. Jasperson is an author and blogger and can be found blogging regularly at Life in the Realm of Fantasy.

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Dinosaurs Among the Birds

I graduated from high school in 1971. My friends and I were so close in those years and we have held onto those connections, despite the rough seas of young adult life. We drifted apart during the ‘blender years,’ but as our children left home and our lives became more our own, we drifted back together.

Fifty years ago, we were young and wild, determined to carve our path in the world and desperate to get on with living. We were tired of the war, tired of politics, and tired of being told what to think by a media that was controlled by pin-headed men in suits. We were tired of Congress selling us out.

We were going to change the world.

We did change it, but not exactly the way we naively believed we would. Even though we were unable to solve all the problems we wanted to, we did manage to make some positive changes. Unfortunately, we were too few, voices shouting in the wind.

And now we are somewhat jaded. The country is still divided, big money still buys votes. Congress is still selling out, and the media is still owned by pin-headed men in suits. There is always a war somewhere, and it is never done with.

My generation clings to our belief that we will see positive changes, but we don’t believe we’ll live long enough to enjoy them. Nevertheless, change is inevitable and it will happen, even if, like Moses and the promised land, we stand on the opposite shore and see only what yet may be.

My old friends and I are not exactly who we were in those wild days. Now we’re an amalgamation of everything we once believed would happen and the reality we lived. We are people who survived Reaganomics, who survived raising children through the MTV years. We held down three part-time jobs because trickle-down economics didn’t really trickle down the social ladder to our rung, and we had kids to feed.

We survived the Bush years with some of our dignity intact and didn’t fold under the “you’re with us, or you’re against us” propaganda designed to shut us up. We will survive whatever comes our way with the current regime because old wood is tough wood and doesn’t break easily.

We are jaded, but we have hope, we old hippies, we old women and men who are dinosaurs among the birds of the modern, hyper-connected world. We still believe the world can be a better place for everyone. The difference is now we know we can change the world… just not in the way we thought we would.

Now we put our money where our mouth is, donating to charities and spending our retirement years volunteering in schools and hospitals. We do it in small ways, chipping away, and little by little we have a positive effect.

We lost the battle to make the world a simpler, kinder place. Our parents were The Greatest Generation, and they won the war with their firm, 20th century belief that only through technology would mankind benefit, and that somewhere a miracle drug was waiting, one able to cure every disease known to man.  It just hadn’t been discovered yet. Now the drug companies have the government’s balls in one hand and a claw-like grip on our pocketbooks with the other. That hoped-for miracle cure is still somewhere out there on the horizon, and likely always will be.

My generation was conquered, despite the struggle to keep it simple. We old hippies now embrace technology and make it ours. We do this because we must either adapt or die, and I am not ready to die. We are a wired society, and we old people have the luxury of a little free time and occasionally, extra money. So, we have become wired.

Writing is my opportunity to live in the world as I would like it to be, and it is my chance to get away from the war, from politics, from family problems. Adult children with complicated epilepsy issues, grandchildren having babies too young (did they learn nothing from my trials and errors?) –writing is my escape.

I support creativity and free-thinking on a local level. I volunteer as municipal liaison for NaNoWriMo. I encourage people from all walks of life, and from every point of view to write. It doesn’t matter to me if we agree politically or not. Everyone has a story to tell. Some stories are real and incredibly moving, and all the writer needs is the skill to tell that story the way it should be told.

They can gain that skill through participating in NaNoWriMo, National Novel Writing Month. Children and schools benefit year-round from writing programs sponsored by this organization. For me, November is the busiest month of the year. I will be meeting and getting to know many new people, and I will be writing the framework for a new novel.  For one month, thousands of people will be too busy writing to spend their evening in front of the electronic altar, being fed mindless pap in the form of ‘entertainment.’ Instead, they will entertain themselves and find they are so much more than they ever thought they could be.

With every new book that is written, each new magazine article or essay, the world opens its eyes a bit more, seeing more possibilities. Readers discover they are not islands disconnected from society, cocooned in dark living-rooms, unable to look away from the poorly crafted mind-porn we are force-fed.

I am an old hippy, I admit it. But I am water, wearing away at ignorance, helping the world learn how to tell its story one person at a time.