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!