For a long time my neurologists and neurosurgeons have argued about whether or not I have epilepsy. Yes, argued is appropriate because when you have eight neuro people in the room, getting heated and waving their arms around – it not only constitutes an argument, it constitutes a scene. It’s always been 50/50 too, not really leaning one way or not, a constant back and forth.
My original neurosurgeon, who I will always regard as the gold standard, thought I had epilepsy due to a neuro exam and backed by an EEG. My parents described absence seizures (then called petite mal seizures). Apparently, I would stare off into space, my eyelids would flutter, and they couldn’t get my attention. But it wasn’t daydreaming because even if they touched me, it didn’t register. I would stop speaking midsentence, stop moving, whatever I was doing except for standing. (I really don’t know why standing is the exception because if I was walking, I would stop walking, but not fall. I only fell if I was in the middle of a step or on stairs.)
But these seizures lasted two to five seconds. The time it took to say no more than four words. So were they really happening? And if they were, did I actually have Epilepsy? (Just because someone has a seizure, does not mean they have a seizure disorder.)
- My EEG Results showed seizure activity and patterns found in people with Epilepsy.
- Parents, relatives, doctors and teachers witnessed what they believed to be seizures.
- These “seizures” would make me stop whatever I was doing, and I had no idea what was happening. When I would come to, it would be as if I lost time, not being able to recall anything that transpired during said seizure.
- I have Hydrocephalus, a history of brain bleeds and traumatic brain injury that often result in developing Epilepsy.
- My EEG results showed “spiking” activity, which many neurologists argue are different from epileptic seizure activity. Counter argument: Spiking activity is most common with Absence Epilepsy, which was the type of Epilepsy those “for” said I had.
- The seizures were so brief, no one could prove if I simply spaced out or had a true seizure.
- Epilepsy medication had no effect on me. They did not make my seizures worse or better.
I stopped taking my anti-seizure medication in high school because I didn’t see a point. And because absence seizures did not (often) result in serious injury, I never pursued it further. Every new neurosurgeon would want me to do an EEG, but then they would bicker with their colleagues over the results, and what it all meant.
Posted in Family, Health, Medical, Opinion, Personal, Thoughts
Tagged Absence Epilepsy, absence seizures, anti-seizure medication, divided opinion, EEG, epilepsy, grand mal seizures, lost time, neurologists, neurology, petite mal seizures, seizure, spacey
For most of my life, I’ve been an orphan whose parents were still very much alive. I had to provide for myself, starting work when I was ten, bounced around and was even homeless because I was too young to sign a lease even if I had the money for rent (I did not get the paperwork for my independence finished until right before I became of age – ironic I know).
My mom was terribly abusive – physically, verbally, emotionally – she tried her best to break me and perhaps she did in some ways, but I’m resilient as fuck and came out the other side. My dad was different. He was a crappy dad. When I was strangled and dumped by my mother, my sides black and blue, and finger marks on my neck, he told me “you have a way of bringing out the violence in others” and would blame me. He told me I pushed buttons and shouldn’t make her angry. He also told me over and over how difficult I was to love.
I’ll be honest my mother may have screwed me up (in ways I have since overcome, I feel) but I feel like my dad actually affected me more. My dad was high functioning and a wonderful father to my three siblings. He wasn’t abusive himself besides these comments, he was more neglectful and abandoning than abusive. And that’s why his words meant more. His absence, not wanting me, telling me I deserved what I got, that I was unworthy of love or human affection. My mom was crazy. I may have been her punching bag, but she was miserable and did not play well with others – period. Her entire life was a lie that few people bought because she couldn’t keep up with everything. But I couldn’t say that about my dad.
Posted in Family, Home, Love, Parenting, Personal, Relationships, Thoughts, Uncategorized
Tagged "child abuse", father, forgiveness, moving forward, neglect, orphan, reconciliation, redefining relationships
Lately, I have been frustrated because I am totally blocked. I’m not writing and it’s not out of laziness, being too busy or due to a lack of trying. I know why I’m blocked, but that isn’t helping. It’s like in 2009 when I was blocked because I had several strokes and grand mal seizures, which resulted in severe head trauma and neurological impairment (it took months to heal/come back from that but I did). I know what’s up but I am not in a position to actually fix it myself, and as long as I remain a human being and not a sociopath there is no way for me to “not let this affect me”.
What’s worse is that it’s a cycle that feeds itself. Like I might be juggling A, B and C and they together are creating my block, but not writing new pieces or submitting or working on a manuscript (which I realize, I have actually not, not done, in roughly twelve years) is making me more frustrated, more out of sync to actually create, revise, or submit.
I just want to write. I want to be creating new pieces. I want to be inspired. I want to be working on a book because it’s not only writing but working towards something that could actually allow me to do this full time while financially supporting myself. (It’s not like I’m looking to get rich from writing, please!) I want to be submitting. I want to be getting published. I want to work on other pieces that are close but not quite ready. I want to get out of this funk. I want to bulldoze through my block. I hate this.
Posted in Inspiration, Journal, Life, Personal, Publishing, Thoughts, Writers, Writing
Tagged blocked, career, manuscript, rut, submitting, writers block, writing retreat
July 4th has always been the biggest-deal holiday in my family. It’s my father’s favorite and the one holiday when he really goes all out. He gets the BIG fireworks and really puts on a show. Growing up, we would go out of the way to all of these fireworks tents, getting (often-illegal) fireworks. My brother and I would have fun with snakes and tanks and party poppers and snappers throughout the 3rd and the 4th. We would be out in the driveway, just having a good time.
The night of the 4th, my dad would go all out and it was usually a big affair. It’s not like he did this in the middle of the city. We were at relatives in the country or at his house with permission from the neighbors (he was always very respectful about that, luckily where we lived most people are fireworks enthusiasts and did not mind). We were with my grandparents of step-grandparents and cousins and aunts and uncles, maybe a friend or two from my dad’s work and so on. It was always a social thing and everyone, even those who had been with us in past years, were always impressed.
Posted in community, Events, Family, Happy, Holidays, Home, Journal, Life, Personal, Relationships, travel
Tagged fireworks, Independence Day, July 4, memories, Nebraska, Omaha, traditions
Last week my husband and I celebrated five years of marriage. It feels like a milestone, and honestly it kind of is. The average marriage in the U.S. lasts less than a decade, like years short. So I feel like making it though the first five years – we each deserve a big pat on the back. I also feel like because of what our marriage has endured/survived – it makes me all the more sure we’re going to make it “’til death do us part.”
I’m not going to lie, being married was nothing like I thought it would be, and I feel like I have a pretty down-to-earth un-romanticized idea of marriage, which led me to think about how I feel about marriage, and what it is.
- Marriage is never how or what you think it will be. Even the most level head, it’s like having kids, you think you can be prepared but the picture you have in your head is never what you actually get. This isn’t a good or bad thing, because it’s a little bit of both. Marriage isn’t what you expect in ways of reality, commitment and difficulties along the way. Marriage also isn’t what you expect in the most wonderful ways. You can be head over heels in love and think, “Wow, I get to spend the rest of my life with this person,” but you still can’t actually grasp the joy and wonder and awesomeness in finding your other half and making the choice each day to be committed to each other.
- Marriage isn’t for the faint of heart. It’s hard, it’s work, it’s every day but the point is it is worth all of that and the good outweighs the bad without question.
- Marriage is a marathon, not a sprint. I’m always talking about “long-game” because the big picture matters but how you get there can change. It’s about be adaptive, flexible and understanding you married another person, not an extension of you. They are going to have their own ways of doing things, traits, quirks and priorities so nothing is your way anymore, and it shouldn’t be theirs either. It’s all about compromise. Your goals, values and vision of your relationship should be in sync, but that doesn’t mean two people will be in their execution.
- Marriage is about compromise – see above.
- Marriage is not about changing each other, otherwise why did you get married? In my vows I told my husband that he isn’t perfect but that he was perfect for me. He does things that drive me crazy, I do things that frustrate him, but we knew who we were before we got married, and who the other person was. Changing him would mean I would be married to a stranger. I didn’t marry him as a project, and he didn’t marry hoping to make me more like him. Obviously things like mental illness, compulsive behavior, addiction, or other harmful behaviors may come up in a person’s marriage, but that isn’t about who the person is, it’s about them changing a harmful behavior. Everything else should only change if it is a part of that person’s personal journey and evolution. Not because someone else is trying to turn them into something they’re not.
- Marriage is a choice. Every day that you are married, you’re choosing that person, and choosing to be committed to them all over again. Marriage is a choice you keep making until you’re not married or that whole “death” thing happens.
- Marriage is built upon pillars that are necessary, but doesn’t abide by any rules or prescribed plan otherwise. A marriage needs love, trust, communication, respect and support. Without these pillars, the relationship will ultimately crumble. It doesn’t mean that those things will always be present in bad times, but they should be nurtured and tended to. Beyond that, in terms of “how” you tend to them, what else is important, what exercises or habits one should do – there is no right way. I know a couple that actually consist of three people, so a throuple. It’s not something I understand or could ever do or want, but they’ve been married and faithful and happy for over twenty years. I know people in open relationships, people who, like my husband and I, are old-school monogamous. Some couples swear one date every other week is enough, others say twice a week, others, particularly with kids in the mix say they’re lucky to go out once a month. I feel that there is no right way. What works for me may not work for someone else. As long as the pillars are in place and healthy, then do whatever works for you, and of course you find that out through trial and error. Some people act like they have the secret to a successful marriage, but there is only one secret – stay married. The thing that every single successful marriage has in common is the choice to stay married. That’s it. You stay married. You choose your spouse and commit yourself to them again and again and again. Because your love and commitment is the sun, and everything else is just a bunch of noise. Roy is my sun and no amount of noise will make me forget that, and while I don’t usually speak for him, I know he feels the same.
I’m grateful for the five years I’ve been married to my husband, and the years before that and all of the years to come. Our five years have been marked by incredible highs with special romantic getaways, anniversaries, birthdays, fun dates, just being content at home as well as the hard stuff: sudden unemployment, mental illness, life and death health stuff, family drama on both sides, and each breaking habits/corrected behaviors that hurt the other. Now, it’s not like I think from here on out it’s easy, but I’m saying we got through all of that still intact. Some marriages encounter a slump, others have bad times spread out, but we have survived and come out stronger from an awful lot of crap that I don’t feel most marriages face in their first five years – and here we are. Still standing.
It’s been a wonderful anniversary, which I’ll write about later. My husband has celebrated me and today I am taking him on a surprise adventure to celebrate him. Five years – what a ride it’s been and I’m excited to see where the next five years take us.
Posted in Events, Family, Home, Love, marriage, Personal, Relationships, Romance, Thoughts
Tagged anniversary, five year, milestone, special day, wedding anniversary