I have been told time and again that, right now, my job is my health. I have heard multiple people express how chronic illness is a full time job. I understand that. I really do. But I still feel driven to do SOMETHING with my days.
I’ve been a writer since I was 12 years old. I’ve spent the last 36 years intermittently writing everything from fan fiction (Poor Luke Duke fell in love with me so many times when I was 13) to unpublished fantasy novels to local newspaper articles to this blog. I love writing. I also love trying new things. I’ve tried my hand at nearly everything I’ve ever had an interest in, just to see if it fit.
Most of it didn’t, for one reason or another. As regular readers know, I found something that made my heart go pittypat in herpetology and my research into Burmese Pythons. But epilepsy has taken that away from me. You can find details in previous articles, so I won’t take up space rehashing it here.
I still feel a desire to do something with the times like these when I am not drugged out of my tree or having so many seizures that I can’t complete a full sentence without stopping. Yes, eventually we’ll probably do something more with this blog. But what else?
Right now I feel like I’m just taking up space. I feel like, aside from this blog, I’m not accomplishing anything of use. Yeah, yeah, I know I’m not useless. Yeah, I know I’m not taking up space. I just want to be productive.
So, now what?
Yes, I plan on continuing to write for BH. I know I’m doing some good here. But what else? I have other projects that I started PE (Pre-epilepsy) but are they things I want to pursue? I just don’t know. I’ve got a spiffy room to create art if I want to. I have three books that I have partial story bibles for. One of them, I’ve even written a bunch of scenes for.
Here’s the thing. It’s urban fantasy. Is anyone going to take me seriously with BH if I publish a book about faeries? Should I bother with the UF even though I love where this potential series is going? Should I just write it for me? Do I get a nom deplume for one of them? And what about the art? Do I just abandon it and chalk it up to something that didn’t fit? Am I asking too many questions for this paragraph?
So, now what?
There is so much I still want to do with my life. I can’t let an illness keep me from doing at least some of it.
David Bowie, a loss I will feel for a long time, was someone whose music and movies I grew up with. He was a person who taught me that being different is okay. Being different is good. From him I learned that we can show our difference to the world boldly and without shame.
His last gift to us, his fans, has taught me so much. The painfully raw video, “Lazarus” is a visceral reminder that, beyond the pain, beyond the frustration and anger, beyond the heartache that illness brings, we all still have one thing.
Remember how drug commercials have this big, long list of side effects? And how, when you get a prescription filled, they give you an encyclopedia’s worth of papers about that med? There really is a reason for that.
Once in a very great while, someone will have one of the extremely rare side effects on that list of extremely rare side effects. Lucky me, I won that lottery. Now, if I could only win the Powerball…
Even as I write this, I still feel a bit detached from the situation. Thank goodness I don’t find it funny anymore. Though, you gotta admit, my telling the receptionist to calm down and take deep breaths while calling about this weird suicidal ideation thing… That’s pretty funny.
But I digress for comic relief.
What happened scared my husband, my father, and probably a few other people who are uncomfortable talking about this kind of thing. When we’re talking about medication and the brain, no one really thinks that a super rare side effect is going to happen. That’s the reason that it’s a super rare side effect. But it does happen.
Before I go on, let me just say that this is NO ONE’S fault. We had been working my dosage up slowly to get me acclimated to the new drug and I was doing just fine aside from still having some seizures. I had already been weaned off the old drug so there wasn’t an interaction. I don’t blame anyone and no one is at fault.
With that in mind, what follows is what I can remember when we went from 100 to 200mg of the antiepileptic med. I took the first one at night, figuring the sooner the better. I noticed I was sad, but I thought that was because of the phenomenal cost of the pills. So I was doing what I usually do in this case: mentally beating myself up. Fortunately, my daughter was on Facebook and we had a good time pretending to be Starfleet officers. By the time I went to sleep, I was feeling much better.
The next morning, I woke up feeling alright, still smiling about the previous night’s fun. Then, about a half an hour after I took my morning pills, that’s when things started to go sideways.
I kept looking over at the steel hair stick on my nightstand and wondering, for no reason whatsoever, if puncturing my jugular with it would kill me. That should have been the first sign that something wasn’t right, but it seemed like what I should be doing. Nobody suggested it. I wasn’t reading or watching anything that influenced me. It was just part of the list of things I should do that day.
So I started researching which would kill me faster, puncturing the jugular or the carotid. Turns out, the carotid will make you bleed out faster. Since I didn’t remember where exactly in the neck that was, I started looking at physiology diagrams to find the best place to stab myself without making too much of a mess.
That was when Ken asked me to look up the address for the new Veterinarian because my dog had an appointment. I felt mildly agitated because he was tearing me away from my research. Yes, the research on the best place to stab myself. It was okay though because he was taking the dog and I was to call him with the info.
Through all of this, the linear equation of A (stabbing) + B (carotid artery) = Dead wasn’t making sense. Stabbing was something you did. The carotid artery was a thing in my body. The two weren’t associated in any way at all. It was just something I was doing. Like a honey-do list, but with sharp things.
Even after I called Ken with the address, I still hadn’t been jarred out of this state. But there was something that didn’t seem quite right. When I had the diagram in front of me that showed me the best place to hit my carotid, something seemed weird.
I thought maybe something was wrong with my meds but I didn’t want to bother my neurologist’s office with nothing, so instead I called the suicide hotline, thinking they would know the answer. I really didn’t want to kill myself, but stabbing myself in the carotid just seemed like the thing I should be doing.
And that was what I calmly explained to the man who took my call.
Just as calmly, he explained that I should call my neurologist and tell them what was happening because I was having what he referred to as “suicidal ideation”.
Which is weird.
I mean, it’s not like I wanted to die or anything.
It was all just so weird.
And that’s what I told the receptionist at the neurologist’s when I called. I had this weird thing going on and the man at suicide hotline said I should call there.
That was when I thought something might be wrong, because she started getting really upset. So I told her to calm down and take deep breaths, that it was okay. I just had this weird thing.
No big deal, right?
After I got off the phone with her, I called Ken and told him what was going on. He very calmly told me he would be right home and I should just stay in bed. I was pretty pliant at that point and feeling kind of sleepy, so staying in bed sounded okay.
I don’t remember much of anything after he got home. I know he took a call from the neurologist. Then I think I slept for a while. I remember going to the doctor’s office later to pick up free trial packs of the new dosage because Ken wouldn’t let me stay at home alone. And that also seemed weird to me.
During that entire time period, it was as if all of my actions and their consequences were completely separated from one another. If I stabbed myself with a sharp object, nothing would happen because all I was doing was moving my hand. My carotid artery was just this place that existed on my body and not the target of a pointy thing. It would still continue being an undamaged thing on my body.
It was so weird.
Two days later, I was perfectly fine. Granted I was still having some seizures, but they’re not as frequent. I am holding out hope that increasing this medication at a slower rate will control my epilepsy. I’d say it can’t get any worse, but as I found out, it most certainly can.
Thanks Maria for sharing a very personal story, but bringing up a point we should all be aware of : Medication comes with side effects. Some of them are very dangerous. Maria recognized this was “weird”, and thankfully reached out to get help. It is indeed not the fault of anyone, but it is important for everyone to be aware of th
As we all know, there are good days and there are bad days. Yesterday just happened to be a good day. After an afternoon at Disney, I got to have coffee at a little Bohemian place without having to be wheeled in. So YAY! That trip to the coffee house reminded me of just how much I missed that simple pleasure of being out around people who were simply enjoying themselves. The murmur of conversation seasoned liberally with peals of laughter was soothing and it made me happier than I have been in a while.
Yes, I said ‘wheeled in’. Last week, my husband and I came to the decision that, if we wanted to keep going to Disney on a regular basis, I would need a wheelchair that didn’t cost us $12 per visit to the parks. So, thank you Craigslist, we found a nice one with good brakes for $50. That may sound like a lot, but Ken did some research and discovered that, brand new, that same chair cost $350. Ken also found a place to get it adjusted for $35. We can’t complain. That might sound like a good day, but for me, it really wasn’t. It was pretty awful. After all, how often do you get to be reminded that your life is going to Hell and you have to buy the hand basket, yourself? Talk about adding insult to injury.
So, of course, I had guilt. I felt guilty because my husband has to push me around in this ugly contraption. I felt guilty because we had to actually spend money on this thing. I felt guilty because, once more, I failed to get better despite money we spent on medications and the fact that I had to spend money to get medical insurance. I felt guilty because, if I don’t take the costly medications, I have a 60% chance of dying if I go into status epilepticus. I have guilt because if I die, my husband will probably drink himself to death.
I know at this point you’re wondering what the title of the article has to do with anything I’m writing. Don’t worry. We’re getting there.
Ken has been working to find a good price for the new medication my neurologist wants me to try. Vimpat is $625 for a one-month supply here in the US. It’s $83 for 100 pills from Canada, but it could take as long as three weeks to get the meds here. Which means that there is every chance that I could go into nonconvulsive status epilepticus (NCSE) without those meds. The conundrum there is that we have been building up the Vimpat dosage while weaning me off the old anticonvulsants so my body is relying solely on this new medication.
NCSE, or nonconvulsive status epilepticus occurs when an epileptic has a seizure that lasts more than five minutes. During that time, I could stop breathing. My heart could stop beating. Any number of things could happen to end my life. On top of that, NCSE can look like drowsiness or irritability for those of us who don’t have convulsions, so it’s pretty hard to diagnose. As if that all weren’t scary enough, NCSE has a sixty percent mortality rate.
Which brings us (Finally!) to the lessons I learned from one of my favorite animated movies, “Kung Fu Panda”. The main character, a panda named Po, is “accidentally” appointed the long-prophesized Dragon Warrior. Afterwards, the ancient tortoise, Master Oogway finds Po stuffing himself full of peaches since he eats when he is upset.
Oogway tells Po one of the most insightful things I’ve heard, “You are too concerned with what was and what will be. Yesterday is history. Tomorrow is a mystery. But today is a gift. That is why they call it The Present.”
There is nothing we can do about the past. It is already gone and cannot be changed. We do not know with any certainty what will happen in the future. All we have is right here and right now. This moment.
As terrifying as the future possibilities might be, I cannot do anything to change them. I can prepare, but to constantly anticipate every possibility will only make living life more of a challenge that it already is. Like I did last night at the coffee house, I will try to live more often in the moment because to do less would be to rob myself of what time I do have left.
When I was young, I dreamed of performing on a Broadway stage so I threw myself into acting at a young age. I got a few roles in community theater and I even co-stared in one production. Then, when I got into high school, my popularity as an actor declined. I did get a few small roles (remember, there are never small roles, only small actors), but nothing like before. Which was okay. I was still performing.
Since I was in my middle school choir, I was admitted to my high school choir as an alto. In spite of the small roles and complete lack of solos, my dreams of Broadway continued to grow. But when a parent is diagnosed with cancer, dreams have to be set aside. Singing lessons are no longer on the list of priorities when a family member is fighting for survival. Fortunately, that parent has been cancer free for over 30 years.
College demanded a career focus and even though I took acting classes, my major took too much focus. Children came soon after and the pressures of being a parent made the dreams of a life on the stage impossibility, though I still got into a few community theater productions over the years.
Finally, the kids were independent enough that I could start singing lessons again. At 42, I knew I was too old for Broadway. The dream that had been put on the back burner had eventually burnt out. I mourned the loss of it for a very long time. Once in a while, I still do.
I was excited to be taught by a friend who is a professionally trained opera singer. She encouraged me to learn for my own enjoyment and put behind me the criticisms and hateful voices from my past. So I started learning vocal exercises and breath control. That’s when I started noticing a problem.
Of course I ignored it at first, especially since my friend complemented me on the natural vibrato in my voice when I sang. I was also told repeatedly that my control would improve with time. But I couldn’t help being concerned about the stuttering exhale that became more evident during breath control exercises.
It wasn’t long after that I noticed a shaking in my right thumb that I had no control over. I also noticed that a few of my other fingers did the same shaking thing to a lesser degree. So I went to my doctor and he told me that I probably had what are called Benign (or Familial) Essential Tremors, a chronic nervous system disorder that causes involuntary rhythmic shaking. My neurologist later confirmed this diagnosis.
Have you ever seen an older person whose hand shakes back and forth? That’s ET. Unfortunately, this disorder can affect any part of the body. But it usually appears in the hands, head (nodding) and…voice. Yeah.
Imagine trying to give a presentation at an international conference when you sound terrified. I did that and I sounded horrible. I sounded like I had no idea what I was talking about, even though I had been working on my research for a year.
At a workshop on ET, I learned that the only way to temporarily fix the problem with my vocal chords is to get injections of Botox. I don’t know about you, but I don’t want anybody sticking needles in my throat.
Thus I have joined the ranks of Samuel Adams, Audrey Hepburn, Sandra Day O’Connor and others who dealt with this disorder. It’s nice knowing I’m not alone and that this condition can be improved with medication. But stress and anxiety make the tremors worse in spite of the medication. I found that out the hard way.
Since then, I have tried singing along with the radio and I found that I cannot hold a note. The acoustics in the shower are no longer my friend. I had dreams, but those are impossible now. My song has been silenced.
My chronic illness always gives me a real sense of wonder.
I wonder when my meds are going to kick in this morning. I wonder when I’m going to stop having seizures. I wonder if I’m going to have a good day or a bad day. And most of all, I wonder when I’m going to be better. Am I ever going to be better?
Having a chronic illness is exhausting. I wonder when I’m going to have enough energy to do some of the things I used to do. Like maybe leave the house for something besides doctor visits. I wonder if I’m ever going to get through an entire day without having to sleep so much because my meds make me feel drugged.
Then there’s the pain. I wonder when my skull will finally crack like the eggshell it seems to be. I wonder when the feeling of someone stabbing knitting needles into my brain will finally stop. I wonder if I’m going to continue having these debilitating headaches. And I wonder that if I do, am I going to have to change anticonvulsant medications. I understand from talking to others that I’ll have to be weaned off this med and then start the process of building up to the therapeutic dosage of the new medication. I’m really not looking forward to that. It seems like a form of slow torture. So I wonder if I’m ever going to get off this medication merry-go-round.
I wonder if I’m ever going to be me again. It’s frustrating as all Hell trying to figure out how to get back a sense of my normal self. I’m starting to lose hope that I will ever get back there. Three months is a long time for a newbie like me. But I know many others have been dealing with their illnesses much longer. I also know that I may never be back to my old self and it makes me sad. And angry.
I hate feeling self-centered. I get so blooming angry and my sense of wonder makes me think, “Why did this have to happen to me? I was doing so well.” I was following my dream of becoming a biologist. And now I wonder if I’m ever going to get that chance again. Sometimes I cry because I think my days of doing research with really big Burmese Pythons are probably over. And sometimes I get so angry that my jaws ache from gritting my teeth so hard. Once in a great while I even allow myself to scream out my frustration, sorrow and anger.
I wonder if I’m ever going to be able to drive again. Florida state law permits me to drive after six months of starting medication, but I’m a hazard to others. Ten seconds of having an absence seizure could kill someone. I won’t take the chance of harming others because the law permits me to drive. So there goes my dream car. I really wanted my next vehicle to be a full electric Kia Soul because I am environmentally conscious and climate change is a real thing that I don’t want to contribute to. Or should I say I didn’t want to contribute to? But on the plus side, I’m selling my beloved white Ford F150, Yeti, to my eldest son for a song. Well it’s a plus for him anyway.
Like I said, having a chronic illness gives me a real sense of wonder.
Yet again, thank you Maria for sharing what so many of us go through. I think we wonder that so few people share what having a chronic illness feels like. We seem to be a nation of “just suck it up”, and there is no way to “such up” such pain, both physical and emotional. Just knowing, it’s not just me and I am not weak, I find is a help. This is incredibly tough, and no one asks you before if you are brave or strong enough to handle it. I hope, and I don’t wonder, that soon Maria will be feeling better. Finding that Goldilocks medication zone takes a long time.
Also huge thanks to Mark Roberts for the amazing photographs of Coney Island at the end of the season to accompany this article.
On Thursday, August 20th, I was diagnosed with focal epilepsy that has the potential to be generalized epilepsy. What that means is that only specific areas of my brain are having electrical malfunctions, but my EEG shows that there is a tremendous potential for it to spread and affect my entire brain.
I don’t have the kind of seizures you see on TV where the epileptic is flailing about and convulsing. Mine are more insidious. For anywhhere from 10 second up to three minutes, I check out and flip the switch for the Vacancy sign. I am peripherally aware of what people are doing or saying, but, for that time, which feels much, much longer,I lose voluntary motor control. No matter how loudly I scream at myself in my head, I cannot force myself to move. Someone else can move me, but the limb they pick up, simply flops back down. From the outside, I look like a marionette whose strings have gone slack. My eyelids also flutter like hummingbird wings in the middle of one of these episodes. At the end, I go right back to being fully alert and normalcy resumes.
My neurologist has started me on a baby dose of a long-standing seizure med called Lamotrigine. It’s supposed to regulate the sodium channels in my brain. Since I’m so sensitive to medications, I can’t start at what would normally be the therapeutic dose. I’m already having headaches and nausea but I’m not sure if that’s what is referred to as an “aura”, or if I’m experiencing an oft reported side effect of Lamotrigine.
An aura is basically a precursor to a seizure. It is also considered the beginning stage. The type of aura a person experiences varies from individual to individual. Mine is headache and/or nausea. Of course an aura can’t be the scent of chocolate chip cookies or the sound of rain on a tin roof. No it’s got to be unpleasant. But it’s basically an early warning system that tells you that, any time in the next few seconds to hours, you’re going to have a seizure.I lose track of time very easily between the point that I notice an aura and the time I have a seizure so my aura might only last a few seconds, or it could be half an hour. I honestly don’t know. So please don’t ask me.As if losing control of my body and misplacing minutes wasn’t bad enough, Florida state law stipulates that someone diagnosed with epilepsy cannot legally drive for a minimum of six months. So now, my husband and son are scrambling to arrange their work schedules so that neither lose their jobs. Public transportation is basically nonexistent in our little town and it’s going to be at least two more weeks before our son has his license again
Of course I understand logically why the state has that law. It’s just really upsetting knowing that I’m causing problems for my family. And yes, I know I’m not doing it intentionally. Yes I know it’s not my fault. But (there’s always a “but”) if I had a normal brain, we wouldn’t have to deal with this.
I can already hear the objections to my statement because my friends and family have already said these things time and again. But that doesn’t keep me from being sad, angry and frustrated.
It will get better eventually. I have to believe that. If I don’t, I’ll start worrying about having to have brain surgery and some people get worse after that. Or I’ll start worrying that I’ll have to wait longer than 6 months to drive. I already have to put off going to school for another semester, but a year long driving restriction will put me even further behind on my personal timetable. I can already kiss my research goodbye because I’m not in school and I can’t drive to get over to the lab for experimentation. So, thank you Epilepsy, for sending me back to square one.
But that’s enough whining for now. I’m sticking to “It will get better”, because my other choice is “My life as a biology major is over.”.
Thank you friend for sharing your story. I think you express so well the frustration that is part of any serious illness. It’s not our fault, but there is a feeling of guilt. Our families have to help us, and I knowthe author well enough to know she would much rather be helping others, than being helped! The illness rules all, timetables, vacations, plans all bow down to the illness. I missed my daughter’s wedding, and part of me can never forgive my illness for that. We have plans and lives and so much to do, and medication takes time. Adjusting to it, finding out about the side effects, waiting to see if it works at all, what dose works…..this takes a very long time. It’s hard on everyone.
However, my friend is incredibly strong and has a great husband. I wish there were awards for friends and family that step up again and again, not only to help us but to let us know we are loved. I want to let my friend know, she’s truly worth having in my life! I came to the conclusion we’re all slightly broken, no one is “normal” 100%. I’ve learned so many illnesses don’t show on the outside. This is why it’s so important when you meet someone, to know you can’t see what’s really going on. Empathy is important.
I would also like to share my other friend with epilepsy smells CHILI before she has a seizure. She can never eat chili. She can’t stand it, because of the association of the smell and a seizure. When she asked her doctor “WHY CHILI?” he was “We don’t know why!” Many thanks for writing this to the author! I hope she is soon back driving (I’ve seen the drivers in Florida, trust me, epilepsy is the not the thing they most need to be worried about!), and back at school!