Epilepsy Blog Relay: Suicide and the stigma of epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along!

Elaine’s Story

As people with epilepsy we experience stigma as part of our everyday lives. The stigma associated with epilepsy is a well-researched and firmly established fact. However, stigma does not announce itself. Although the best response to stigma might be education, I sometimes wonder what the best means for education really is. We hear a lot about telling our stories. Storytelling is often done with words, but are there other ways to tell a story?

 

Elaine asks: Can words alone penetrate the silence that is stigma?

When vulnerability turns to feelings of suicide

Being stigmatized increases vulnerability to feelings of suicide. This is another well researched and firmly established fact. I am vulnerable to intermittent feelings of despair and suicide because I face the religious stigma that sees epilepsy as caused by sin. I was raised in a holiness church where disease is frequently attributed to sin. Prayers for repentance and a return to finding “the center of God’s will” are combined equally with prayers for healing from illness. The unspoken assumption in many religious belief systems is that freedom from sin and a life at the center of God’s will leads to a life of health and blessing. In holiness sermons, periods of hospitalization are often described as a time of soul searching where healing comes after the sick person identifies the sin or shortcoming that caused the illness and makes a life change that is a return to the center of God’s will and freedom from sin.

Protecting yourself against stigma

The devaluing of people with epilepsy by religious belief systems and by the people who follow those religious belief systems has been going on for centuries. The fact is, I feel at a complete loss to find words to combat long established religious stigma. First and foremost, I no longer go to churches or form close relationships with people, including members of my family, who use religion, even well-meaning offers for healing prayer, to stigmatize me. I have learned that no matter how much I am devalued by others, the worst is for me to devalue myself. All people with epilepsy are at risk for self-devaluing. The unspoken devaluing of people with epilepsy by others is likely to influence me whether I realize it or not.

Valuing yourself

My living body story will go on even in the face of stigma unless I silence my body story by self-devaluation suicide. I’ve written this poem to remind myself that the devaluation of people with epilepsy stops with me because I refuse to devalue myself.

 

Consensual Reality

Why I will not commit suicide.

I will not commit suicide

Because that would be the easy way out

Not for me

For you.

My suicide will be the easy way out for you

It is easy for you to decide that my voice does not count.

Is one killing enough?

Will I, with my own hand, make it two?

Will I dispose of the body, too?

For you.

Why I will not commit suicide.

 

by Elaine M. Reeves

 

For more stories and more voices, visit Living Well with Epilepsy.


Suicide Resources:

https://www.crisistextline.org/

https://twloha.com/

https://suicidepreventionlifeline.org/

https://www.veteranscrisisline.net/


NEXT UP: Be sure to check out the next post by Lainie at http://electrogirl.com.au/ for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

Become a Sponsor

Epilepsy Blog Relay: Tiffany on Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along!

Tiffany’s Story

As Susan Vreeland once said, “Where there is no human connection, there is no compassion. Without compassion, then community, commitment, loving-kindness, human understanding, and peace all shrivel. Individuals become isolated, the isolated turn cruel, and the tragic hovers in the forms of domestic and civil violence. Art and literature are antidotes to that.”  With similar resolve, I am writing as part of a group of world-changers blogging to reduce the stigma of epilepsy at Living Well With Epilepsy. After reading the post below, please look forward to tomorrow’s post as well! Each blogger may have different stories, but our stories are all pieces of the same puzzle.

How It Feels to be Epileptic Me (Written at Age 16)

I am a blessed one. My epilepsy does not consume my life like many other patients, yet that does not mean that it does not affect my life. Its presence holds me back from letting my adventurous and daring soul run free. Yet meanwhile, it has molded the clay of my heart and personality.

The day that I became epileptic was no different than any other spring day in Louisiana: warm, beautiful, and stuffed with humidity. At the computer in my fourth grade classroom I sat, when suddenly my mind began to stir like a root beer float, fizzy and filling quickly to the brim. Suddenly, a force propelled my body one way and then another. I became temporarily blind, mute, and almost deaf for I could barely hear screams and murmurs around me. I felt like I was falling backwards into a rabbit hole, as if just my head was doing a hundred backflips and front flips simultaneously. Finally I awoke, finding myself cradled in my teachers’ arms on the floor and surrounded by my classmates’ frightened faces. Some mouths gaped open while others shivered, but all looked at me like I was an alien from outer space. It was their fear that confirmed the instance that to me had seemed like an impossible nightmare as reality.

I’ve had many more seizures since fourth grade. Over time I began to get used to the seizures. We began to learn which precautions I needed to take, and an increase of my dosage protected me for a wonderful, seizure-free FOUR years. Then, three days before my sixteenth birthday my epilepsy reemerged with new triggers and strength. I was upset as several new boundaries and limitations in my life were set. My excited plans to go to college in the future were discouraged and considered unwise in my condition. With every couple months of not having a seizure, I built up hope in my heart only to have it crushed by yet another seizure. Yet with these experiences I learned so many important lessons. You see, it is not the bad experiences that have inspired me to write about my epilepsy, but it is what I have learned from them that has formed my identity and made me into who I am.

It was with every seizure that I saw the good in everyone around me. It didn’t matter who my classmates were in class; when I had a seizure, they wanted to help me. It was evident in their eyes, their arms outstretched to help me to the ground, the times they would ask afterwards if I was ok, or the quiet way they showed understanding and respect. Also, it made me realize how short and unpredictable life is. I could not wake up from a seizure one day. Just like after those seizure-free four years I thought I knew how the next days and months of my life were going to go, we all tend to see the future with eyes of today. Yet, life can change in an instant. This inspired me to give what I can to the world every day and try to inspire those around me to do the same. Lastly, my epilepsy has helped me realize the importance of positive thinking. Anyone can focus on their own individual struggles in their life; whether physical or spiritual, big or small we all have them, but we must strive to look at the blessings we have experienced and to encourage each other through life’s challenges. Sometimes people ask me why I smile so often and my explanation is simple: when you truly realize how much God loves you, how can you suppress the immense happiness within your heart? I have people in my life who love me, a comfortable home, a fantastic school, and plenty of food to eat.

I believe that we can let the difficulties in our life shape us into better people. Many people look at epilepsy with a pessimistic view, but I can honestly say as an epileptic that for me it has been not just a struggle, but more importantly, a true blessing.


NEXT UP: Be sure to check out the next post by Elaine at livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

Become a Sponsor

Epilepsy Blog Relay: Jamie on living with epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along!

Jamie’s Story

I’m Jamie Wissinger, live in the blugrass state with my husband, three kids, a crazy hound dog, and a fat cat!  You will often find me on social media chatting about the chronicles of Malu (our calico cat) being on a leash. I also host weekly Seizure First Aid videos on my facebook page where you can share with your network 5 tips on how to react when you see a seizure! I have had Epilepsy my entire life and have been fortunate enough to be seizure free for almost 5 years.  When I was younger, I went 16 years without one!

NEXT UP: Be sure to check out the next post tomorrow by Tiffany at livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

Become a Sponsor

Epilepsy Blog Relay: Colleen’s mom reminds us that knowledge is power

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!

Jennifer’s Story

Prior to Colleen’s birth, I knew absolutely nothing about epilepsy. I had a febrile seizure as a child when a fever spiked, so when I found out that she had two seizures when she arrived at the NICU, there was an immediate thought that like my febrile seizure, maybe this was just something that happened in response to something else and surely it wouldn’t be permanent. But when I first got to see her, I couldn’t even touch her without it causing spikes in her brain activity.

 

20 long days later when she was finally discharged, it was on two seizure medications. We were told by neurologists at the time that this would be something she would likely outgrow. But after every EEG, it was clear there wouldn’t be any slowdown in her abnormal brain activity. Her epilepsy has changed a bit drastically over the years, whether from changing medications or her body changing, I do not know. She had a lot of “silent seizures,” as a baby, so I only knew that she had one if an EEG happened to catch it. And even when it did, Colleen only stopped for a second then seemed to resume her usually activities. Now, I feel that they’re all so different. She has myoclonic jerks, clonic, tonic, absent, and atonic. And this is why awareness is so important. It not only affects her daily activities, but I’m also trying to raise awareness about what to do is someone has a seizure. If Colleen didn’t have epilepsy, I’m not sure to this day if I would know how to help. While realizing that your child may have to struggle with something is heartbreaking as a parent, I’ve read all I can to try to be her biggest advocate.

 

I couldn’t be more thankful for her school, teachers, therapists who are so understanding and even fighting for her. Colleen hasn’t been doing well since the beginning of the school year, so her teacher made a list of all her regressions and had a meeting to see if we could figure out what was going on and specifically, what they could do to help her. I’ve never had to fight for her IEP, and probably my biggest fear as a parent, how she’d be treated by her peers, disappears when she is picked up from school and all her friends say goodbye to her. We hear all the time from teachers how other kids like to take turns pushing her on a swing, or wanting to wait until she was off the bus to walk with her. But I think this stems from awareness and compassion. It is far easier when you know what is going on, and that there are specific ways you can help a person.


Related: Colleen takes on cerebral palsy and epilepsy with a smile


There have certainly been many ups and downs. Leaving her with a sitter while you work and medications being forgotten, or a myclonic jerk that led to almost needing stitches; It’s a very complicated world to try to navigate when you’re trying to make sure your child is safe, but is also thriving. It is so important to try to find ways I can advocate not only for her, but bring awareness for epilepsy as a whole. During her tough times, it was easy to feel lost and not know what to do to help, but also during those times, I’ve found there is a lot more questions being asked. If I can pass on just a little bit of information, then there is one more person who has more knowledge than they did before. Imagine if you were like me and had never known anyone with epilepsy, but you did have knowledge…knowledge is power and I hope that with it, the epilepsy stigma will end, and of course, can only hope and pray for more funding and research.

 

I am currently working on putting together simple seizure first aid animation and hope to have more things to share soon. Follow my blog, www.timetobuildcastles.com to stay up to date, and be sure to share! Now, I hope you’re able to find something you can do to raise awareness! Go out there and be amazing epilepsy warriors.


NEXT UP: Be sure to check out the next post tomorrow by Tiffany at livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

Become a Sponsor

 

 

1 2 3 4 5 153