Tag Archives: my life as a writer

#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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