Succulent plants photograhed by Valerie while in the hospital.

Sometimes having a hidden disability can make you feel like someone has punched you in the gut, but nobody can see it but you. Needless to say, this sucks, but it’s not your fault. You just have to deal with it and somehow make it work.

I was first diagnosed with epilepsy at age 13 after having two grand mals one day after the other. I didn’t know what epilepsy was at the time and I didn’t even know what a seizure was. I just knew I had blanked out and woke up very tired and very confused. Almost 13 years later, my relationship with epilepsy is still unstable. We’ve had good times, bad times, and second-by-second times. While I could easily come up with pages and pages of ways epilepsy has made life more difficult, I think it would be more pleasant for all of us if I told you about how I’ve tried to accept something that’s no doubt challenging but also (so far) here to stay.

I think most people would agree that one of the worst experiences for anyone is having to be hospitalized. Sometimes for a person being monitored for seizures, this means a few days to multiple weeks with “rainbow hair” — a very optimistic word for having one’s head covered in colorful wires. Sometimes it means having to stay in bed due to being a “fall risk,” videotaped 24/7 (except when going to the bathroom), and naturally… more inclined to feel glum. At first, one of the toughest times to get through seemed to be looking out the window on a beautiful day and wishing I was outside. This didn’t do much for me at all, and I forced myself to try to pay attention to how the hospital brings fresh new experiences all the time, and they don’t always have to make us wince. Here’s some insight I’ve gleaned from being in the hospital — things I might never have discovered if I was in any other situation.

1. Met some of the most compassionate people on Earth. I already respected neurologists and other doctors, but only when I was hospitalized did I realize how heroic nurses, PCTs (Patient Care Technicians) and others who work in a hospital can be. I realize it’s part of the job, but it takes a special type of person to do that.

2. Met a roommate who ended up being one of my most treasured friends. The first day she walked in I thought she looked like a weirdo. Sure there were the wires, but she also had a mountain of books on her bed and other miscellaneous objects. By the end of our stay we had each comforted each other after a seizure, traded opinions on the best products at Trader Joe’s, exchanged seizure horror stories, and taught each other the benefits of natural treatments. Let’s just say by the time I left I loved coconut oil and discovered she was just as eclectic as I had judged her to be the first day but slightly less of a weirdo.

3. Rebellion comes in all shapes and forms. It can be fun, but there’s always a time and a place. One of my most memorable times at the hospital was getting out of bed and dancing to house music with my roomie. We were quickly stopped by a nurse and it bummed us out, but was good while it lasted. Speaking of the importance of letting yourself be happy in whatever situation you’re in…

4. Cracking jokes and laughing will get you through s***. Once I was feeling so depressed in the hospital I imitated a grandma, curtsied and said “Welcome to my humble abode.” And while the neurologist very seriously commented that “humor is a sign of good cognitive functioning,” the rest of the team just enjoyed. And me? It was awesome to step out of feeling suppressed and limited and taking more control over my feelings and situation. You can use those flirting skills, or lack thereof, with that resident you may or may not have a crush on. On a similar note…

5. Chat with people! Only if you want to, of course. From a nurse who has spent her breaks backpacking in Chile, to a PCT so proud of her daughter’s hip hop performance (which she recorded and will show to you), to the account of a nurse’s journey to the U.S. from the Philippines, I was even more blown away by these people than I ever thought possible. Try and strike up a conversation. Sometimes it might not work, but if it doesn’t, at least you tried.

6. No matter how annoying things seem, know that everyone is there with the best of intentions. That said, stick up for yourself. Getting your blood pressure, temperature and sanity checked every hour or two can make you want to pull your leads (i.e. EEG wires) out, but it’s all transient and you’ll be OK. On the other hand, if getting woken up at 6 a.m. to get your vitals checked is really stressing you out, try to ask people to adjust.

7. Try not to think too far ahead. Make lists of what you can do now and not after you get out. This is probably the toughest thing on the list, and something I still struggle with all the time. It can be really disappointing to find out you need to stay in the hospital longer, but if you do, try to accept it and think how you could use your time there to take care of yourself and do things you may not have time for outside. Read a book, write a story, watch funny videos, sketch something, etc. You don’t have to suffer so much — there’s always a way to better appreciate the moment and love yourself no matter what.

This list is by no means comprehensive, but hopefully even one or two things on it may make your next hospital stay — or just, you know, your life — even a little more tolerable.

Take care and be well.

We want to hear your story. Become a Mighty contributor here.

Photo by contributor.

RELATED VIDEOS


We were with three other couples, and randomly enough, one of the couples knows someone with epilepsy, another couple (us) has epilepsy, and a third couple’s child is currently testing for newly emerging epilepsy… three out of the four couples somehow touched by epilepsy. And that’s not why we were together… the conversation unexpectedly ended up there. So I say to myself. Why? Why is the epilepsy community – one affecting all races, ages and socio-economic levels – not in the forefront of medical issues when it comes to the general population’s opinion?

 

We, the epilepsy community, are sorely under-recognized in general societal knowledge and funding, yet we outnumber cerebral palsy, multiple sclerosis, muscular dystrophy and Parkinson’s disease combined.

Combined.

We, in our community, have the same number of deaths per year as breast cancer, and yet many friends of ours are barely, if at all, somewhat knowledgeable about epilepsy and seizures. I’m not shaming people. I’m bringing to light the lack of emphasis, the lack of education, the lack of importance, placed on a disease that affects three million people in the United States alone. 65 million in the world. Count that. Soak it in. Seriously. Stop reading and stare at those numbers.

Here’s a perfect anecdote symbolizing the lack of epilepsy exposure: While watching football one day, my son (who’s 4) said to us, “Why are they wearing pink socks, Mommy?” And I thought – for a good reason – to raise awareness of the prominence of breast cancer. An incredibly widespread and worthy cause… which I proceeded to explain to him.

“Then why don’t they wear purple socks, too?”

Damn, he’s intuitive. I smiled.

And I responded, “I don’t know, baby.”

But I do know. Because Epilepsy hasn’t “branded” itself. We don’t have a Susan G. Komen. It doesn’t inspire camaraderie to support epilepsy if you aren’t affected. (Yet.) It isn’t a money maker, attention-grabber, well-recognized cause. (And I make these comments without bitterness, simply stated logically.) Where’s the draw in supporting epilepsy? And that’s why I admire foundations behind breast cancer, pediatric cancer, autism… They’ve created it. Established the prevalence. Made it one hell of an awesome cause to get behind. I’ve not been affected by any of those three examples, but you can bet I know the colors of the ribbons, certain statistics and characteristics associated with each one, participated with reverence in their walks… been behind each of those causes at some point in my life.

So get behind me. Actually, not behind me… next to us. Stand with my husband the caretaker and my son the survivor. Stand with my mom and my dad. My original observers and participants in epilepsy’s violence and the unknown. Stand with the newborn seizing from the moment of birth and the toddler spasming in between gasps of breath. Stand with the child who can’t speak, and the adult who’s still never walked. Stand with the invisible. The visible. The aching. The screaming. The silent. We are here. We are here. We are here. Stand with us.

What can we do to make others see it? It’s a serious question, really. How can we bring the knowledge to the public and present a more effective approach? Make you believe in the cause as you do so many others that may or may not have touched you personally?

I type furiously out of passion, motivation and living. Living it… And through tears. But not tears of sadness or pity. Of love. Of respect. Of wanting something so badly… Of frustration.

We’re all worth it. You’re worth it. Every cause is “worth it.”

But here I’m writing about mine. I’m putting it in your face because frankly, that’s how people notice, and we haven’t done enough in your face. And we need to be. Up in your grill 24/7. Because, dammit, the lives affected by epilepsy are worth it.

So here it is: I’m one in 26 people diagnosed with epilepsy.

I have a disease causing as many deaths every year as breast cancer.

More people are diagnosed with my disease, epilepsy, than Parkinson’s, cerebral palsy, muscular dystrophy and multiple sclerosis combined.

The NIH (National Institutes of Health of the United States government) spent a total of $161 million on epilepsy for 2017, compared to $711 million for breast cancer and $243 million for autism.

And one-third of epilepsy cases are uncontrolled.

Put that in front of as many faces as you are able.

We are here.

Now you know that. If you didn’t, that’s OK… You haven’t had the opportunity. But you do now.

I will teach you. They will teach you. We will teach you.

It’s an overwhelming yet unacknowledged magnitude, but we are visible now. And although you won’t always see it on my face or in my disposition, I am here. I have it. So let me educate you. Please.

It’s time – past time – we put our cause in the forefront. If we don’t, who will?

woman sitting on her chair

OK, I’ve stepped off my soapbox. (Full disclosure, I still have one foot touching it…) Let me leave you with this. One day on Instagram, I came across the quote: “Some people confuse crazy with passionate. Let me be clear, I am bat shit passionate.” (Rebel Circus) That’s it. I am. I am blood-pumping, heart aching, excited for the future, determined to educate and eradicate passionate. And I know I’m not alone.

My son and I want to see purple socks this November (Epilepsy Awareness Month). We want “bat sh*t passionate.” Seriously.

Let’s get busy.

We want to hear your story. Become a Mighty contributor here.


When you hear of someone who has epilepsy, what comes to your mind? Disability? Fighter? “Special needs?” There are a lot of stereotypes for people with disabilities, but do we truly know what other people are thinking? With the help of my college friends, I now know what people think when they find out I have epilepsy. After reading these, I found out that at least in my social circle, people are more interested in wanting to help or learn more about epilepsy than judge negatively.

“When I first knew you had epilepsy, my thoughts about you and who you were as a person did not change at all! I think my initial reaction was “OMG are you OK?” “Is there anything I can do?” “How bad are your seizures?” “What would I do if Kyle had a seizure in my presence and how could I help?” I knew seizures come in different forms, but I didn’t know how strong yours were and what kind of repercussions would occur. Basically I didn’t know what happened to you when you would start seizing.” – Christina

“I knew people with epilepsy, but never had any close friends who had it. I knew I wouldn’t treat you any different than my other friends and would help you any way I could if you needed it.” – Kevin

“I think I first found out you had epilepsy from Kevin, but it didn’t really change my opinion of you or make me look at you any differently. The only thing that changed was that I was more aware of when you were experiencing a seizure and to make sure I was ready to help you (or find someone to help you) if anything serious happened.” – Scott

“Honestly, my first thought was that I knew someone that had an epileptic seizure and I wanted to understand the effects it had on you on a daily basis. I truly wanted to understand how I could be of some help/assistance in any way possible. So like when you would have those mini seizures, I would know to keep track of how many seconds went by for you to understand how long they were. As a friend, I just wanted to be able to help in any way possible.” – Christian

In light of these comments, I think it’s important to recognize that if you have epilepsy, you’re probably not being judged the way you may think. You are a fighter, and other people do realize that.

We want to hear your story. Become a Mighty contributor here.

Photo by contributor.


By far, one of my greatest challenges living with epilepsy is keeping my medication toxicity at bay. I take varied doses four times a day, and the ones in the morning and evening are doozies. The one first thing in the a.m. (300 mg of carbamazepine and 200 mg of lamotrigine) is especially tough to tame, and it can literally leave me flat on my back for two to three hours. Needless to say, excuses for being late to appointments in the morning can wear thin!

Over time, I’ve found five tactics to lessen the toxicity and keep me alert. They’re not rocket science, but maybe one or two of them will help you:

Caveat: I hope this goes without saying, but on the off chance it isn’t obvious, consult your doctor before making any changes to your medication. Do not do it on your own. 

1. If you haven’t evaluated your meds and/or titrated your doses with your doctor for a long time, it might be a good place to start. When I was pregnant and had gained significant weight, we had upped my daily doses pretty darn high. After having my son, I lost weight but I didn’t go back to where I was before. Now 15 years later, I’ve gone back to my original weight. Feeling that living mornings toxic isn’t necessary for someone with controlled epilepsy, my doctor cut back on my morning dose of lamotrigine, and it’s made a world of difference. I’m now in a position to do a few other things to cut back on the toxicity.

2. Eat a fibrous breakfast, making sure you include some bread or other grains. At least for me, it provides a buffer in my stomach. I find that oatmeal without all the sugary fruits and syrup is best.

3. If you’re a coffee hound, as am I, cut back on it or make it weaker. You also could put more milk proportionally in it. As you can imagine, caffeine tends to make blood race just a little faster… and it can throw the meds into your bloodstream and up to your head at a rate your brain is not ready to assimilate. Bam! Wooziness.

4. Similarly, don’t bend from your waist to pick up things, letting your head follow the action down.  The gravity pushing on your head also will do a number on the blood rushing to your brain.

5. Here’s one that’s counterintuitive: Don’t lie down. While it feels good, I’ve found that sitting up keeps the blood pumping at a normal rate in the morning. Lying down while not making the blood rush makes it a lot easier – and thus, faster – to get to your brain.

So, for me, the takeaways are to make sure you don’t do anything that will encourage your blood to rush to your head for a good while (for me, an hour), buffer your stomach with a decent breakfast, and stay seated. And of course I’m grateful to my doctor for giving me a green light to reduce my lamotrigine, even ever so slightly. It made a big difference.

What works for you and what doesn’t? I’d love to build up a toxicity avoidance toolkit together!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Gal2007.


Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before going on, off or altering medication.

I was sitting on a plane listening to one of my favorite podcasts on my way back from a friend’s wedding recently. I was by myself because my husband stayed behind to take care of Mom. Why? 1) Because he is amazing, 2) Because my family couldn’t make a schedule work to fly here and take over while we were both gone and 3) To be honest, it was just too expensive to get us both to this wedding, especially with two more on the docket for the year.

On this podcast I was listening to, Radiolab, the hosts were speaking with a neurologist who referenced a study where researchers found judicial rulings were swayed greatly by extraneous factors like whether a judge had eaten recently or not. The point? Essentially that the brain grows weary, less neurons fire and decision-making and judgment are impaired when someone is tired and hungry.

 

It got me thinking, could this be happening with Mom?

Rewind a few months and and you would find me and the hubby begging Mom to open her mouth for a spoonful of applesauce, trying to get her attention and hold her gaze, encouraging her to swallow, rubbing her throat to help her swallow and giving her mouthfuls of water to wash everything down. We would get her to say words like “Hola” which tricked her into opening her mouth so we could get another spoonful in. Over a decade of brain damage from multiple sclerosis (MS) and epilepsy had left few pathways for her brain cells to communicate with her body successfully. What should take 30 seconds with her could end up taking 30 minutes.

We had been doing her nighttime pills at 7:00 p.m. for as long as I could remember, but for months now it was becoming the ultimate struggle. Mom could no longer be fed with a spoon – bottles only or small cups. No straws because of her dysphagia. And many times when we would be in the middle of the process, she would literally fall asleep and start snoring – mid-swallow, I kid you not!

So I have this lightbulb go off listening to this podcast. What if Mom’s brain functioning, which is already diminished, is simply at its wit’s end by 7:00 p.m. at night? What if we tried doing things a little earlier in the day when her brain isn’t so worn out? The next day I email her neurologist and ask if it is OK to move her nighttime pills up an hour to 6:00 p.m. instead (she takes mostly anti-convulsants, anxiety and vitamin pills at this time). They said that shouldn’t be a problem, so we went for it. Here’s what happened:

It worked. Pill time became exponentially faster – Mom was swallowing and drinking better, and she was much more alert and awake to take medicine.

Mom fell asleep more soundly. Before, our nighttime ritual felt like we were moving at a hundred miles a minute – we would start with the pill struggle, move to diaper change and then brush teeth, take vitals and say goodnight. It was a process that was exhausting and stimulating, not relaxing. Moving to doing pills earlier and giving Mom an hour to relax before bed to watch TV has helped her relax, fall asleep faster and sleep more soundly as far as we can tell.

We gained evening time. As full-time caregivers with jobs, my husband and I often find our meager evening hours consisting of feeding Mom and getting her in her wheelchair for an hour, chores, quick dinner, Skyping family, putting Mom to bed and then potentially errands or more work. Moving her pill time up an hour seems to have made our evening more relaxing as we’re not on this race to the clock, and we’re not experiencing this incredibly frustrating and pain-staking pill process anymore.

Why hadn’t I thought about this before? I ask myself this question from time to time, but that’s the thing about caregiving and guilt. We have to learn not to beat ourselves up when we try something and it works. Instead, we should just celebrate and keep questioning – what little things, tweaks, changes, modifications can we try to make life a little bit easier and better for our loved ones and ourselves? There is no silver bullet that’s going to magically make everything easier, but overtime, the little things will add up.

We want to hear your story. Become a Mighty contributor here.


I recently spoke to Jason Baranello, who at 32 happens to be a Millennial (someone born between approximately 1982 and 2004). He was diagnosed with tonic-clonic epilepsy when he was 19… and didn’t know about the stigma commonly attached to epilepsy. In fact, 13 years later, and having never hid his epilepsy, he still hasn’t experienced stigma.

In the course of research for this article I spoke with him, and our conversation stuck with me. Jason is a smart person who is completely aware of the complex interplay of truth, myths and social constructs around him. He had his first seizure in college and has had a full life, enjoying controlled epilepsy. He is thoroughly integrated into society, one that he reports never makes him feel diminished when he tells any of its members about his epilepsy. “They’re supportive,” he says. What, then, is so different about Jason’s experience than almost everyone else’s?

I began poking around, asking any and all with epilepsy about their experiences with the stigma and how people react when they tell them about their seizures. I realize my research methods leave a lot to be desired, but I did spot a trend: it seems like Millennials are less judgmental of others. A number of researchers cite the trait playing out in regard to race, ethnicity, religion, sexuality, gender identity, etc. Could these more accepted groups include neurological disorders?

Reading through responses from 30 people and comparing those from different generations, I found Millennials were more likely to say they didn’t encounter much of a stigma, that they were open about their epilepsy, and almost always that if someone reacted negatively “that’s their problem.” If this is indeed a real trend, then that’s progress!

The next question: Are the attitudes of these people when revealing their challenges to those without epilepsy having an impact on how the others react? Are they self-assured and unapologetic? Is it a lovely circle of acceptance, both of oneself and of others?

But that’s not the only question. What about fear? This week, I corresponded with a woman, another Millennial who despite sensing that no one in her generation looks down on her, still feels isolated by others’ fear that she will have a seizure around them. So there’s the next hurdle: fear of the scary for those without epilepsy. Of course we need to educate people on how to help someone having a seizure – in itself, a relief for those who feel helpless when called on to do so — and assure people that it’s not contagious, a sign of possession, etc. A little instruction about the whys and types would be good, too. And then there are the videos of different types of seizures. But there must be more we can do. I’ve been corresponding with-now retired stigma researcher Dr. Anne Jacoby, formerly of the University of Liverpool, U.K., about the use of videos and hope to find out more.

So that’s where I’ve gotten. Headline news: The future of reducing prejudices against epilepsy may lie with Millennials! And if this is indeed true, a profound “thank you.”

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Hobo 018.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.