Happy Monday, Life Rearranged readers.
My name is Jessica.
I’m married to a pastor.
We planted a church three years ago.
We have three daughters.
Our middle child is deaf.
I like summer.
And green tea frapps.
I know every Billy Joel song by heart.
Also,
I have Epilepsy.
When Jeannett first asked me to guest post for this series I declined.
I replied with a plethora of excuses.
I just had a baby.
Said baby is nocturnal.
I barely keep up with my own blog.
I’ve guest posted for her before.
Blah, blah, blah.
And mainly?
I’m insecure about my story.
It’s uneventful.
Boring.
I rarely talk about it.
My first seizure occurred in a high school Algebra class in 1993.
I had an MRI and it came back negative for abnormalities.
I had a second seizure a month later.
I was diagnosed with Epilepsy,
put on medication and have had a handful of seizures since.
Usually when meds are being changed and/or adjusted.
Or I forget to take them.
That’s it.
I live an otherwise “normal” life.
I can drive.
I got married.
I had babies.
My daughters don’t even know.
That’s how minimally it affects us.
When our little girl, Ashlyn was diagnosed with a hearing loss, well-meaning people spoke into my life.
Telling me stories of their babies who required tubes.
And as soon as the tubes were in place their little ones were cured.
Tubes did not fix our daughter’s hearing loss.
Her deafness is genetic.
So, although they meant well, I was jealous.
And wondered why God didn’t make our journey with Ashlyn as easy.
Why didn’t we get the quick fix?
And honestly.
I wanted to tell them to stop talking.
Their words bothered me.
They did not bring comfort.
That’s exactly how I feel about my Epilepsy story.
I am embarrassed and unfit to be grouped with those legitimately struggling.
Little children who have uncontrollable seizures on a daily basis.
While helpless parents watch.
Adults who are unable to work or drive or care for families.
Adults who cannot even have families.
People of all ages die from seizures every day.
Their lives are interrupted in ways I do not understand.
So I humbly tell my story.
On a broken soap box.
I won’t talk long.
And I pray you don’t want me to stop.
I want to offer hope.
I want you to know that 50 years ago, I would have been greatly affected by uncontrollable seizures.
Today, I live a very functional life thanks to funding and research and the miracle of modern medicine.
I am thankful.
I want you to know that epilepsy has many different faces.
Little ones.
Old ones.
Weary ones.
Carefree ones.
I do not pretend to have some great financial need.
We have health insurance.
My Epilepsy is a $10 co-pay every three months.
But for so many this disease costs so much more.
Their Epilepsy is multiple ambulance rides and emergency room visits.
Extensive hospital stays.
Traveling from specialist to specialist for answers.
And never getting them.
Scans, testing and failed drugs.
For some reason, up until now, my journey has been easy.
But for so many, this disease greatly interferes with their everyday life.
I’m sure you’re already aware that Jeannett and her family are participating in a Walk to End Epilepsy.
They are raising money for patient care, advocacy, research and education at the Greater Epilepsy Foundation of Los Angeles.
Would you consider donating?
She is more than halfway to her goal.
I am a carefree voice speaking on behalf of the many weary ones.
Let’s help her reach it.
* * * *
I’ve been friends with Jessica for several years now.
What Jessica doesn’t know (until now) is that two simple texts from her, helped this mama’s perspective more than any book, motivational speech, or list of statistics.
The night I was pacing the hallway of the emergency room, praying for the first time ever, that God would not take my girl home that night, Jess sent me a bible verse. It was the perfect verse. The one I needed. The one that shattered my wall of holding it together, and left me crying. And I needed to cry. I should have been crying. But I was trying so hard to be strong.
But the next text…one line…
“By the way, you know I have Epilepsy, right?”
No. No I didn’t not.
But I knew Jess lived a full and beautiful life. A life with husbands and babies and jobs and friends and passions and causes and all the things we dream of for our children.
I had always secretly wondered if Jill would be able to have those things. That even if she conquered her struggles with Cerebral Palsy, would the Epilepsy still hold her back? Would this one piece of her change everything…no matter how far she came with anything else?
Jessica gave me HOPE.
Right there in the hallway of the ER.
And I smiled…smiled…through tears and a wailing heart.
Deep breath, mama. Go back in that room.
There is hope.
So, Jess…love you. Your story has value. Promise.
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I also have epilepsy and was not diagnosed for 13 years. (Absence seizures can be tricky.) I want to mention–just in case it helps someone–that neurofeedback changed my life. Even after diagnosis and medication, I continued to have seizures. Hundreds a day forany years, and the best I got down to was 5-20 a day. Enter neurofeedback. No seizures. Not one. Miraculous. I have to keep it us (like exercise) but it gave me a freedom I had never known. Most neurologists talk to me like I’m dousing myself with chicken blood when I talk about it, but my results speak louder than their narrow perspective. It works wonders for me and I’m not giving it up.
Best to everyone here!
All I can say is God bless all of you. Thank you for your stories.
Thank you for making me cry. And letting me share my story. I’m glad it blessed you. And Go Jilly!!!!
Tears. Happiness! Thank you for guest posting! Beautiful story and encouragement. <3
I have the honor of calling Jess a real life friend, she recently gave me much needed words of encouragement when I had a miscarriage in August. You are amazing, Jess! Blessings to you all. God is always good :)
Whitney
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My sentiments exactly. I had childhood seizures which affected me maybe a tad more than yours but I GREW OUT OF THEM.
However, what a blessing the medications were. That I could go to school and lead a normal life.
How different my life would have been without them!
The people who struggle with epilepsy have a special place in my heart.
Thanks for writing.
My husband has epilepsy. And he’s a college professor. And he has two kids. And he lives a full and happy life. With epilepsy. Ours costs a bit more with neurologists appointments every three months, three daily medications, and a break-through pill for the times he has a seizure, but he’s down to 2 seizures a month so the cost is worth it.
I worked in the disability resource center at a major university and there was a girl attending the university who had severe CP. She was unable to care for herself, strapped into a wheelchair, only able to utter a few words, and required 24 hour nurses. She was able to move one–yes, ONE–finger. She graduated with a degree in creative writing.
There’s hope. Always.
God bless you all. keep writting such wonderful storiesvideo