Roller coaster in amusement park.

When Epilepsy Is Like a Roller Coaster Ride

74
74
0

Have you ever been on a roller coaster ride? If you have epilepsy, then your entire life can be a roller coaster ride. Epilepsy throws so many challenges that some days, I literally feel like I have been on a roller coaster. I experience all stages of a roller coaster ride throughout my battle with epilepsy, and sometimes all of these stages in one day. Why go to Cedar Point to ride a roller coaster when you have epilepsy?

The beginning of our ride starts when we have our first seizure. For the majority of us, it will unfortunately be the most harmful and memorable one. We never planned for this to happen, and we sure did not expect it to happen. For some, that day or night in the hospital is the most dreadful experience of their lives. Family members can try to cheer you up in any way they can, but your life has changed forever. All you want are answers from doctors who seem to take forever while you are laying in a hospital bed confused, scared, and not sure what will happen next!

Our uphill ride is all the doctor visits, medical tests and surgeries we may have to go through. This uphill ascent is similar to the uncertainty of how it feels when a roller coaster gets ready to drop. For some this may include experiencing full brain surgery. If that is not an uphill ride, I do not know what is! We engage in this process because we believe something out there can help our specific epilepsy needs. If we refuse to quit, in the end we can know we gave it our all and our best fight.

Our light at the end of the tunnel can appear when we receive the news that the doctors found a way to minimize our seizures. Most of us would give anything to reduce our seizures. Doctors work around the clock with all this new technology to develop new ways to cure people with epilepsy. Even if you do not think you will be cured or have your symptoms reduced, remember you have stayed on this roller coaster ride from the very beginning. You have not given up thus far, and neither have the doctors. The ride is far from over, and I believe it is important to always remain strong and positive!

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

Thinkstock photo by Vitaly Edush.

 

74
74
0

RELATED VIDEOS

JOIN THE CONVERSATION

Finding Meaning When You're Housebound With Epilepsy

171
171
4

A dear friend of mine whose daughter’s epilepsy first struck when she was 14 left me speechless. She told me that I, unknowingly, had saved her from hopelessness, simply by existing. I had meaning. She saw that I had a good life despite my condition and could envision a future for her daughter filled with happiness and achievement.  (Flash forward:  In college now, her child just got all As and is a varsity athlete.) Her daughter’s life has been affected, no doubt, but her epilepsy never stopped her.

She’s one of the lucky ones, though. Her epilepsy is controlled and she lives with relatively few barriers. With no choice but to stay at home, many with uncontrolled epilepsy can’t work in traditional jobs and struggle to find meaning in their lives. But what is meaning?

Starting at the beginning, here’s the definition according to The American Heritage College Dictionary:

“1.  Something conveyed or signified; sense or significance.  2.  Something one wishes to convey, esp. by language.  3.  An interpreted goal, intent, or end.  4.  Inner significance….”

While all four apply to our search for meaning, I’m particularly fond of “4,” which acknowledges the importance of simply who we are. For example, even being the recipient of care is meaningful to the caregiver, and in a positive way.

When I was looking for meaning in my own life, one article I found especially helpful was “Cultivating Contentment: Creating Meaning in Your Life,” by Rachel Fintzy, MA, LMFT. While she writes for people with depression, it’s nonetheless valuable to all. It includes a process labeled with the acronym “SPECIFIC PATHS” to zero in on meaning for oneself, and she lists possibilities for meaningful activities and qualities of one’s life. Caveat:  Many of the listed items won’t apply to you, but some may. More likely, they could spark other thoughts as you identify the meaningful facets of your life.  Certainly, it opened my eyes.

I asked a question on the social media site “My Epilepsy Team,” urging people who are housebound and/or unable to have a traditional job to describe how they find and create meaning in their lives:

“I was homebound for about a year after I had brain surgery performed in 2001. I was then partnered with my first service dog who helped me regain my independence. Now, in 2017 I have had two great canine partners over the past 16 years, and I am able to accomplish anything I want in life. I formed a nonprofit organization, called: My Assistance Dog Inc. to help educate and inform people about assistance dogs and the amazing work they can perform. We have been successful helping people around the world truly understand the benefits these dogs perform. We have a following on Facebook. I learned that it even with my disability, I could lead a meaningful life and help others do the same.”

“I’m homebound and used to crochet.  I looked for a hospital that needed baby blankets or hats for newborns and I would make them….”

“…. I sometimes get stressed being at home. I write poetry and songs… this time I’m writing a book about my life and hope the Lord helps me through it.”

“[I believe] God doesn’t give us more than we can handle.  We all have a purpose here on Earth. I know it’s difficult.  I [have] been fighting epilepsy my whole life, but WE MUST NOT GIVE UP!”

But enough.  The last quote says it all.

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

Thinkstock image by m-imagephotography.

171
171
4
JOIN THE CONVERSATION

Why We Should Remember to Treat Our Chronically Ill Bodies With Kindness

76
76
0

I was thinking yesterday, as I read through blogs of young women who had a chronic illness or watched their YouTube videos, of how much the body can both wreak havoc, yet always seek to get better. I read through women’s blogs on Lyme disease, chronic pain, and multiple other conditions. It made me realize that I’m not alone, and even though we have different conditions, many of our symptoms are shared to some degree or other.

It made me feel many things. I raised my hands in solidarity with these women, as I can relate to some of their struggles. I felt inspired and in awe of their valor and strength. And then, I thought about myself, and my own experiences as someone living with epilepsy.

I am a young woman with generalized epilepsy and was diagnosed when I was 12, a primordial age in the development of someone’s identity. I’ve had a very complex relationship with my condition. Mainly I have always tried to hide it, stuff it under the mattress, kick it to the side, and if it began to loom during conversation, I used to shove it aside. I used to hate it because it hurt me so much physically, emotionally, mentally.

And it still does. Seizures hurt, and you don’t really understand until you have one how it feels to wake up from one. The overall soreness, the terrible headache, nausea, chewed up, bleeding tongue, confusion, and humiliation as someone looks over you with pity and helps you get up. Not to mention the surprise bruises and cuts you get depending on where it happened. And the absolute anxiety and fear that another one is around the corner, but you won’t be notified as to when or where.

Yet my body always did its best to help me heal. It would initially urge me to sleep, and I would for about three to four hours in order to recover, experiencing the deepest, darkest sleep, no dreams allowed. It would sew up my cut up knees, my bruised and bleeding tongue. And it wasn’t only when I had seizures that it would help me heal.

Anytime I had a flu, a cut, or even fever. Anytime I overate and my body would digest the food as best as it could, releasing insulin and producing stomach acid, always trying to get me back in balance. My body always looked out for me, always wanted me to survive. And it still fights for me.

It was this realization that made me so emotional; got a few tears down my cheeks. It may not be so for some spoonies out there with conditions in which the body attacks itself, and I can’t foresee into my future and guarantee my body will never attack me. I don’t consider my seizures to be an attack of my body to myself, rather I consider them to be a symptom that something is off balance. What? Well, I wish I knew when I was 12 and never had to take medication. Maybe a food allergy, maybe a hormonal imbalance. Maybe I will never know for sure.

The point here and the realization I came to yesterday is: be kind to your body, and be kind to yourself. I have hated parts of myself. I have hated my belly, always wanting a perfect flat Victoria Secret stomach. I have hated my nose, claiming it is too large and pointy. My legs were too skinny for my liking and I seemed to (completely) lack a butt. My hair wasn’t full enough, I didn’t like my teeth or my wrists, or my skin…

The list was long! And I would restrict my eating to lose belly fat. And I would stare at myself carefully examining my features trying to figure out my best angle. And I would pluck, shave and wax away all my body hair, because body hair on a girl? Yuck! So unnatural, right?

I am by no means perfect now. I am continuously working on loving and taking better care of myself. But realizing how amazing my body really is, how much it battles for me, how it always looks out for me, healing my cuts, bruises, and aching body, how can I hurt it? How can I punish it or claim it is not perfect? I have a body, I am able to walk, talk, think, enjoy the sunshine and wind on my skin. I am able to taste delicious food, to exercise and see beauty in landscapes. I know it sounds a bit like rainbows and unicorns, but its a powerful realization to wake up to the fact that we are enough and perfect exactly as we are. Our bodies don’t need to be hated and punished, they need to be cared for and loved.

Be in awe of your body and all the functions it does for you! It digests your food and helps you get rid of waste. It allows you to sleep, to regenerate and recover into the next day. It heals you from cuts and bruises. It helps you breathe. It allows you to see and hear.

And even if your body doesn’t do some or any of the things I just listed, still be kind, still try to love it. It can be hard but it is one of the best and most rewarding things we can do. To just accept our bodies as they are, be kind to them, and love them.

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

Thinkstock Image By: Ridofranz

76
76
0
TOPICS
JOIN THE CONVERSATION

What a Pro Cheerleader's Epilepsy Taught Me About Bravery

120
120
0

I will never forget when I found out that one of the professional cheerleaders I had worked with for years had an invisible illness none of us knew about. I was shocked at how truly invisible it was. With the increase in “entertainment” budgets for professional sports teams, more and more it is becoming standard practice to have bright concert style lighting, including strobe lights, at these events. Professional sports teams have learned that they are really professional entertainers.

When we upgraded our system, an email landed in my inbox – asking that we “slow down” the lights. One of our cheerleaders had a seizure disorder that only a handful of people even knew about. She had hidden it so well that most of the squad didn’t know. But our new lights were a problem, being blasted full force in her face as they were. So with some prompting from her coach, she finally admitted they might be slightly bothersome (she never would flat out complain about it, ever).

 

We made adjustments, and I kept in contact with her every few games to make sure it was all good. I think she would rather not have had to say anything, and I could relate to her desire for privacy, and reluctance to make a fuss about it. Then one day out of nowhere I found myself on the unexpected flip side – I collapsed at a game and had a seizure. It wasn’t the lights. It was my medication, or my heart, or any number of other things that were later pinpointed as “possible” factors. But it wasn’t the lights. Neurological testing turned up nothing. Chances are I will never have another. But the fear at the time was very real. The uncertainty was unbearable. And my admiration for her became that much more personal.

She lived with this possibility every waking minute. Yet she was smart, accomplished, caring and talented. It hadn’t stopped her from pursuing her dreams.

That’s when I realized the tremendous courage it must have taken to become a professional cheerleader despite such a condition. To put yourself out there like that, in front of thousands and thousands of people, knowing something could happen. To have to look flawless, act flawlessly and essentially be flawless – while taking medication, avoiding triggers and trying not to give away your secret. I had done it for years with my own depression and anxiety – but this was different. She was the embodiment of bravery and perseverance – and I just hoped I could find even some of that strength in myself.

For months I lived with the uncertainty of whether it would happen again. I was told not to drive, because with no certain cause, there was no certain cure. But the unknown was starting to become more than I could handle, so I reached out to her for reassurance that I wasn’t alone. She was quick to offer support and encouragement, and words of wisdom about how scary it can be. She wanted me to know I’m not alone, and that she was available to talk, or listen. She understood that feeling of floating around in the unknown, waiting for answers. Despite being younger than me, she was a veteran at this.

When eventually it became clear that the cause was likely not neurological in nature, I was definitely relieved. Even the prospect of long term heart medication seemed like nothing in comparison. But I was still living in a land of uncertainty. Would I lose my job? What was happening to me? Is it all in my head?

When I returned to work I was afraid that everyone could see my fear, my “weakness” as I perceived it. But I kept going, I kept working. Even if that meant I was hiding a cardiac event monitor under my shirt, with leads and wires and a belt pack, while making up excuses why I would set off the metal detector, I kept going. Even when I started beta blockers – heart medication that left me practically unable to move I was so tired. I kept going. I wanted to be brave too. I tried to take on what I saw in her. Unflinching determination in the face of life-altering obstacles. So I kept going.

I have to remind myself frequently just how invisible a chronic illness can be – mine, and everyone else’s. But no matter how alone I may feel at times, I know I am never truly alone. There are others out there fighting their own battles, just as silently. Behind the pom-poms and the glitter, there was a warrior right in front of me. An inspiration to us all, to never let anything come between you and your dreams. And an example of how our stories can bring light to someone else’s darkest hours.

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

Thinkstock photo via Mike Watson Images.

120
120
0
JOIN THE CONVERSATION

We Need to Remember That Healthcare Is Personal, Not Just Political

52
52
2

Healthcare has been on my (and many people’s) mind a lot lately. I’ve been thinking (panicking) about how the upcoming changes to the Affordable Care Act would affect me and those around me. While considering this, I thought about what I could add to the conversation. There’s so much out there already: opinions, statistics, stories, editorials, predictions. What more could possibly said?

I was left with one thought: healthcare is so incredibly personal, yet it’s being treated more and more as if it’s a public issue. I guess when everyone’s private issue is being discussed, it does become public. A public debate, a public issue, a social problem. It’s easy to have it become numbers on a screen, amounts of money in a budget. Tax regulation and legislative policy. But it’s so much more than that – it’s our lives. Our lives are being treated as pawns in a game, tax dollars, bodies to pay into a budget.

This isn’t about politics for me though. Like pretty much everyone else, I am directly affected by my healthcare. As a child, I didn’t have health insurance. For many years, I didn’t know or care about that. As I got older, I began to notice the worry in my parents’ faces when I was sick. I began to hear the whispers about whether or not I would need to go to the doctor, how much that could cost, if it was absolutely necessary. I come from a low-income family. I don’t say that for pity, but for context. There was no job-provided benefits package for my parents, so we made due. I never went hungry, but I watched my parents scrape by some months. Some years were better than others, but as a child you don’t always understand.

When I had my first seizure at 14, my parents debated what to do next. It was obvious I needed emergency medical attention but I knew they were terrified of the cost. But life isn’t always cheap. So we went to the hospital and went through a barrage of tests. As an adult looking back, I now have an idea of just how expensive that day must’ve been. An ER visit ($900), an MRI ($600), blood work ($150), a CT scan ($400). A month’s income going right down the drain. I am lucky because after my first ER visit, I was referred to Seattle Children’s Hospital, where I would continue care for my soon-to-be-diagnosed epilepsy. And the financial services department at the hospital saved my family from falling through the cracks. They helped my parents pay off the original bills, provided my care pro bono and helped my parents sign me up for Medicare. To this day, I am so thankful to that hospital and the people who helped us in one of the hardest times of my life.

 

I remained on Medicare until a year ago, when I got health insurance through my new job. Having spent a lot of time using government-assisted healthcare, I can tell you it is not glamourous. As a kid, I received dental care through Medicare. I had my wisdom teeth removed while awake, with no medication beyond novocaine. I had no choice in which doctor I could visit, so I was sent to the state doctor’s office in the worst part of town.

After 18, I was switched from the child plan to the adult plan. Which meant a six-month wait for a doctor appointment, a nine-month wait for a neurologist, no dental care and no vision care. I made the choice to buy my own health insurance, even though I’m still eligible for Medicare, because I felt I wasn’t receiving quality healthcare. My doctors didn’t know who I was, I had to visit a neurologist that was an hour away who mispronounced my name and forgot what kind of epilepsy I have. I felt like I was just a government check to the doctor’s office, not a patient. I hadn’t seen a dentist in two years. I was at the end of my rope but knew that the extra $120 a month was worth getting a better shot at control over my health.

And it has been. I’m on a new anti-epileptic medication, have a regular doctor, I don’t have to go to Planned Parenthood for birth control, I got new glasses and have a dentist who greets me by name every time I walk in their office. Healthcare is personal. We tell people about the most personal parts of us. We trust our doctors, tell them our sexual history, how many drinks we drink (and are sometimes honest), we strip down in their office and put our feet up on the stirrups. We have to trust our doctors and often, that means putting our fate in the hands of them and our health insurance providers.

Sometimes our health requires more than the bare minimum and a lack of funds shouldn’t bar us from receiving high quality care. I hope it doesn’t seem as if I’m slamming Medicare, because that’s not my intent. I am incredibly thankful for the care I received and you never know – someday, I may need it again.

But we forget that many people spend their entire lives without health insurance or on a plan that gives them the bare minimum. People fall through the cracks. They are afraid to go to the dentist after years of being unable to afford it. They let symptoms persist because there’s a six month wait for a new doctor. Some don’t take their medication because their insurance doesn’t cover it.

We hear these stories all the time but we don’t really put faces to these stories. I am here to tell you that there are people who, for them, this is the reality. This was me. I am lucky to be able to afford insurance. But there are so many who can’t and if Medicare is cut away even more, there will inevitably be many, many more who are unable to get care. Call your legislator, do your research and talk about it.

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

Thinkstock photo via Ridofranz.

52
52
2
TOPICS
JOIN THE CONVERSATION

When I Had My First Grand Mal Seizure

261
261
1

I was diagnosed with epilepsy in early 2009. It began after a bout with the flu, which kept me at home, in bed and out of school for three weeks prior. On my first day back, I was getting ready in the morning. At that time, being a 14-year-old, I spent a lot of time straightening my hair, which was what I was doing right before my (presumably) first grand mal seizure.

For those who don’t know much about epilepsy, here’s a brief explanation: epilepsy is a neurological condition that manifests in many ways, brought on by a surge of neural firing in the brain. Seizures can manifest in big ways, like the seizures you see in movies (grand mal/tonic-clonic seizures) and little ways (focal/petit mal/absence seizures). Some people space out, make repetitive motions, feel a sense of deja-vu, smack their lips, or just feel funny for 30 seconds to two minutes or so. Then there’s the big ones; full consciousness lost, eyes rolling back, grunting, body rigidness, loss of bladder control, and shaking. The stuff most people imagine when they hear the big E word. The “fun stuff” I got to experience for the first time that day.

One of the most asked questions I get when I tell people I have seizures is “What does it feel like to have a seizure?” Which is a great question with a pretty disappointing answer: almost nothing. The fun part lies in the moments immediately prior to a seizure. I’m one of the lucky(?) ones who experience an aura prior to a seizure. This is a mixed feeling of slight panic, nausea, chills yet also overheating at the same time, the-room-is-spinning-oh-my-god-it’s-happening-isn’t-it-why-can’t-I-feel-my-legs? Then my eyes focus on a single spot, usually a light or picture, and then the room goes black.

Which takes me back to my first reported grand mal seizure. I was getting ready and all of the aforementioned feelings washed over me and I was freaked out. But the weirdest part is, when you’re feeling all of those things, you also can’t really talk. I can’t speak for everyone with seizures because every case is different, but when I have an aura, my communication skills fall apart and I’m stuck feeling all of these things but unable to speak up. So I stood in my bathroom, looking in the mirror, unable to figure out why I was feeling like my head was about to explode, when I blacked out.

When I woke up, I was lying on the bathroom floor. My head hurt, my body ached, and I was in a daze. My dad was at my side, obviously panicked, a man who is not easily distressed. The rest of the day is a blur now, but after a seizure, most people are groggy for a day or so. There was a trip to the hospital, MRI’s and other tests done, lots of questions from doctors I no longer remember, and I went home with a referral to a neurologist at a Children’s Hospital.

I’ll spare the details, but after a couple months of testing, there was still no diagnosis. Seizures can happen to almost anyone under the right circumstances and one seizure doesn’t mean you’re epileptic. It would take another year and another grand mal seizure to get that for me. And when I did, it felt nice to have a diagnosis in writing, proof that there was a reason for these incidents: focal epilepsy with secondary onset grand mal seizures. In simple terms, partial seizures (ones you can’t see) beginning in one part of the brain that sometimes spread to the rest, causing the big seizures (ones you can see).

Eight years later, I’m in a much different place in life. I’m a teacher, working with 20 wonderful 5-year-olds. I live away from home. But epilepsy is still a major part of my life. Not definitive, but definitely an obstacle.

Follow this journey on Thoughts and Shocks.

Thinkstock photo by Cynoclub.

261
261
1
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.