We all have different types of epilepsy, different versions of the condition and sometimes additional conditions compounding it that might make it a little more difficult to manage. No matter what, though, taking ownership of epilepsy management is important. We have a life that requires being more aware of ourselves physically and emotionally every day. This gives us the opportunity for a consciousness that some people never experience.
Though we all have different needs and schedules, I wanted to share mine and how taking responsibility helped me feel empowered.
Daily Life with Epilepsy
6:00 A.M. – Take medication.
6:30 A.M. – The time difference between when I take my medication and when I get up is crucial for me. I used to only have seizures in the first 15-30 minutes after waking up. While that is not the case anymore, it doesn’t change decades of habit. Like many of us, the regularity of timing our medications is also important, which kinda stinks on weekends when I don’t have to wake up early.
Morning – I am hyper aware of what my body is doing. If I drop my coffee when leaving a coffee shop, I assess whether it may have been a tremor, small seizure, if I just stumbled, or if I was holding too many things at once. If I jab myself in the eye with the mascara wand, I evaluate if that was that a tremor or I’m just bad at putting on makeup this early in the morning.
Daytime – I always have medication with me, keeping it in my purse. That way, if I decide to pick up groceries after work or meet for a visit with a friend, I have it with me. There is never a time that I don’t have my medication available to me. I might forget my wallet or phone, but never my meds. At my workplace, I keep a spare blouse and pair of slacks in case I trip and tear the pants or ruin my top from the blood on my fingers if I am lucky enough to have caught myself. Like a creepy haunting, I am never alone. Even if I have not had a seizure recently, I am always aware and prepared for those situations.
6:00 P.M. – Take medication.
Evenings – I love to run, and in my running belt I keep an evening and morning supply of medication, all of my emergency contact information as well as my prescriptions and allergies. Even though it’s somewhat cumbersome, I always have that belt, just in case. All of my friends have my emergency contacts, even if they have never met. I have to be super aware about the state of my body, but this self-assessment has been a benefit to me whether it’s comes to running or meeting up with friends.
9:00(ish) P.M. – My end of the day might be earlier than most, but it doesn’t feel inconvenient because I enjoy cozying up in my pajamas and reading in bed. And, of course, I have my medication with me.
It might be easier to exist without epilepsy. I don’t actually know anymore. What I know is the accountability and reliability of being responsible for taking medication twice a day. I trust in my ability to be dependable. What I know is how to assess my body for injuries, triggers, or changes. I trust that when I am running to know when to walk because something isn’t right, even if it has nothing to do with epilepsy. What I know is how to tell when a bad attitude is the result of regular restlessness or reactive to an event. I trust in my ability to solve that emotional state on my own, by reaching out to friends or by needing to speak to a neurologist.
How many positive things in our lives can we trust in because of epilepsy? I bet it’s more than expected. Epilepsy in everyday life gives us a personal awareness in ourselves. We have more to build upon because of it. It’s a foundation to who we are as long as we are willing to listen.
I had not planned to run my own post during this epilepsy blog relay. But that’s the thing about the stories we receive at Living Well With Epilepsy, they are surprising and inspiring. Lauren’s Fake It Til You Make It story resonated so much with me that I wanted, no, I needed to take a moment to get a little real about what life is like for me trying to manage epilepsy while also being in what Kelly Corrigan termed, “The Middle Place.”
My Middle Place
First off, if you haven’t read Kelly Corrigan’s, “The Middle Place” I would encourage you to go out and read it now. Because if you are not already facing issues of caring for aging family members while still caring for yourself (and maybe even caring for your own kids) chances are pretty good you will at some point. It’s a great read filled with love and humor that addresses chronic illness and dealing raising children, having your own illness, and managing aging parents, all at the same time.
I mention this because I’m 48, and at the moment I’m deep in the trenches dealing with two very ill and aging parents. My dad is hospitalized with a variety of issues. Let’s just say they’ve been rebuilding his heart since 1982, so he’s surviving on the force of his own will at this point. Meanwhile, my mom has early onset Alzheimer’s, can’t be left alone and her disease is progressing faster than we would like. So, my sisters and I have descended on my parent’s house in Cape Cod, MA to fill in the gaps here.
Like most people, I do better managing my chronic illness when I get enough sleep, eat well, get enough exercise and have a regular routine. Let’s just be honest, enough sleep is out the effing window right now. My sisters and I are taking shifts with Mom to ensure someone gets a bit of sleep since her days and nights are flipped. I have to say I am pretty grateful to have such amazing siblings.
And as far as a regular routine goes, well I’ve been separated from my husband and daughter to help manage this craziness. So regular routine’s out the window too.
What Can I Do
I can be honest with myself and with you guys. I can be grateful for the side-splitting laughs I’m having with my sisters. I can be thankful for this time with my mom and dad. I can be grateful for the flexibility my husband and daughter have given to allow this time to care for my parents.
This amount of gratitude would normally make me want to roll my eyes. But with so many things out of my control, I feel like it is an important and positive thing for me to concentrate on.
A Word of Thanks
To that end, I might as well close this piece with a few words of thanks. Thank you Lauren for inspiring me to share what is happening in my world. Thank you to everyone sharing their stories during this epilepsy blog relay. Thank you to our sponsors and media partners who make the epilepsy blog relay possible. Thank you to everyone sharing and commenting on social media. Thank you to everyone who is being so patient with me right now. Thank you to my sisters for everything they are doing. Thank you to my cousins for everything they have done to get us to this point. And thank you to my husband and daughter for their patience, love and support.
Keep those inspiring stories coming. I need them right now!
I’ve always been good at (somewhat) ignoring the struggle. I guess I’ve made a habit of fake it til you make it to get by with epilepsy. Many people who meet me say I have a calming energy–like I am at peace. This includes co-workers, friends, and acquaintances. I am constantly surprised, because I never quite feel that way. All through college friends and students knew me as this happy, energetic butterfly without a care in the world. Little did they know I was having weekly absence seizures and all the while I was pretending like nothing was wrong. Doctors had attributed these episodes to stress, but I knew they were something more. I would not let people think that my dizzy spells and horrible memory were the cause of stress. My ego was too big. So I faked my way through them.
Faking it til you make it (not always the best plan…)
I had undiagnosed absence seizures from the time I was approx. 13 to 24 years old. How did I have seizures for 10-12 years without people really noticing? I kept moving. I pretended like nothing had happened. These seizures would even happen while I was teaching in front of a classroom during Graduate School, yet I would routinely go to my desk in the middle of a lecture, like I was simply going through papers. I’d come out of them needing to remember where I was and what I was doing, but I found a way to always make it look like I was just in deep thought.
Why this charade? I held myself to the highest standards: I had to graduate, I had to be healthy, I had to constantly be put together; “Normal”, which to me at the time meant having no problems. So, I kept these episodes to myself. I was ashamed of them.
When I had drop seizures, even after breaking bones, I would tell people that I had tripped. I didn’t know what else to say. It didn’t help that the memory of falling in the first place was a blur.
“And you know that when the truth is told
That you can get what you want, or you can just get old
You’re gonna, kick off before you even get halfway through.”
I heard these Billy Joel lyrics, from the song Vienna, shortly after my first Grand Mal seizure at 24 years old, while I was in a horrible state of depression. When I feel like I am not accomplished enough, they help me slow down to this day. Health must always come before reaching my goals.
While I no longer have weekly absence seizures, it seems like I still am able to “fake it” to this day. I am now on Epilepsy medications that make me feel somewhat manic. I have days where I am anxious, days where I am depressed, and days where I am on top of the world.
The photos are meant to show the difference between how we often feel vs. how we look. When I wake up depressed, I often feel like I am forever stuck in the mental state that I was in during my last EEG: strapped to a hospital bed for 7 days, forced to have seizures, and unable to have visitors due to COVID restrictions.
Yet on days that I feel this way, no one seems to see a difference. I only really reveal it to my parents. When I am with them, they seem to receive the blunt end of it. Why? Because I know that they will love me no matter what. After writing this, I can clearly see that my greatest struggle through Epilepsy has been learning to love myself. I will always work on that.
Fake it Until You Make it?
I still “fake it”, because what else is there to do? I either keep having seizures, or I continue to take these mood-altering medications that seem to prevent them. Risk of seizures vs. mental health issues? There is no right answer. But I know that I am not alone. There are millions of people who are not on Epilepsy meds who suffer from anxiety and depression on the daily. And there are millions of people who might look perfectly happy, but who are struggling beneath it all.
I am very undecided about whether the ability to fake my way through manic tendencies is good or bad. I think it often makes me feel more alone. But that is why we have this blog. I hope that what I wrote will help someone out there feel less alone.
Receiving a diagnosis of a rare epilepsy is not what anyone wants for their child and family. It is a struggle to learn about this rare condition that your child will not outgrow and impacts every aspect of their daily life. As parents and caretakers, we have to make frequent decisions for our children’s health and well-being, and these are often complicated choices with no straightforward answers. It’s a struggle with the anxiety and grief that accompany the many unknowns.
My rare disease community has been invaluable for support and advice. I have also been fortunate to have good friends and family members who have stepped up and tried to help my family throughout this journey. If you are trying to provide support to a newly diagnosed family, I wanted to share my experience on what others have done that made life easier for our family.
1. Choose supportive words carefully.
Don’t minimize my child’s disease by saying he “looks good” or will probably “outgrow it.” I realize these sentiments come from a supportive place, but that can feel dismissive with all that my son is going through. We are frequently dealing with seizures, hospitalizations, frequent visits to doctors and specialists, blood draws, multiple therapies, side effects from medications, and more. While he may not look sick, he is dealing with a lot. Acknowledging his and our family’s struggle is more impactful than glossing over it.
2. Be open-minded and patient.
Cognitive delays impact my son’s decision making and social interactions. His behavioral issues and tantrums can frighten others or cast judgement against my son or my parenting. Kindness and empathy for the fact that both he and I are doing the best that we can in those moments is very much appreciated.
3. Reach out to caregivers.
Being a caregiver for someone with a chronic and severe medical condition is mentally and physically exhausting, making my free time limited. While caregiver communities offer vital support and information, I still want and need relationships with friends and family. I appreciate it when people check in with me, but I ask for your understanding if I am not in the mood to talk or have to cancel plans at the last minute. That is not a reflection of you or our relationship. I am often dealing with a lot of heavy things regarding my son’s care, and sometimes I need to take time to process.
4. Simply listening.
I face an ongoing cycle of grief that can be triggered by a variety of things and unloading my concerns can be cathartic. I don’t expect people to understand everything I contend with, but I appreciate when you make the effort to hear me. Simple, heartfelt words of support and encouragement are helpful.
5. Tell me about your family’s successes.
I want to share your family’s joys and triumphs with you and don’t want a wall between us because my son is sick. While it might sometimes be hard for me to watch your child do things that my child can’t, I am genuinely happy for your family.
6. Include our family in your plans.
Our lives are fraught with challenges, which gives us all the more reason to want to go to a party or see friends. Continue to invite us and please be understanding if we have to cancel last minute. I often have to make a difficult decision to avoid situations to keep my son from potential seizure triggers which limits our social interactions. Asking what you can do to make it easier for us to be a part of your plans and being flexible is priceless.
7. Here’s some little ways to help.
When your child can end up in the hospital with no warning, it is very stressful to handle the other details of day-to-day life while you are away. Being surrounded by a support system makes a big difference, and often people don’t know how to help. Things like cooking, grocery shopping, or helping with childcare can ease the stress. Any relief you can offer will be greatly appreciated and helps me feel supported when I need it most.
8. Please include my son.
I really appreciate it when you invite my child to be involved and when you are flexible in accommodating his needs so that he is able to participate. He has so many limitations on what he can do, but he loves being around people and having fun. It means the world to my son and our family when he’s included and feels a part of people’s lives.