More Than Stone

From an article in Exceptional Parent, entitled “SEIZURES AND TEENS: The Impact of Seizures and Epilepsy on Families”

To effectively cope with epilepsy, families must navigate through
three stressful phases. These include the initial crisis period, the
chronic phase, and long-term maintenance of the disorder. In the
initial phase, parents begin to recognize symptoms, explore evaluations
and testing, obtain an initial diagnosis, begin medications,
and increase their knowledge of the condition. This phase usually
takes around six months to two years. In the chronic phase, children
and parents will need to establish a relationship with healthcare
professionals; understand and accept the seizures; disclose
and educate peers and family members about epilepsy; manage
medications; learn about treatment options and side effects;
watch for other conditions such as learning disabilities and mood
disorders; search for appropriate schools and programs; and deal
with bullying, teasing, and stigma. The third group of tasks will
address longer-term effects of seizures. These tasks include coming
to terms with one’s strengths and weaknesses; understanding
what is reality versus perception; establishing long-term goals;
gaining independence; and maintaining flexibility in spite of the
unpredictability of seizures. The growth and independence of the
family members and stability of the family will ultimately depend
on the parent and family’s successful adaptation to the stressors
and ability to address these tasks.

I wish I had found this article last year when I was afraid I was going crazy. I think we are in the chronic phase…perhaps even moving towards maintenance…

Dear Mr. Roker,

I heard your comments and your apology regarding epilepsy. I also heard you say that you were not joking about epilepsy, but I don’t believe that to be true.

You said:

“Some people actually complained that the logo actually sent them into epileptic seizures, (laugh by someone in the background), others say it’s just downright ugly. Well we asked you to weigh in on our website in an informal poll, and those of you that could get up off the floor, after shaking around…”

Mr Roker, you were making fun. And as always, when someone uses another person as the butt of their joke, it was not only done in poor taste, but it was also incredibly ignorant. My daughter, age 14, has photosensitive epilepsy. Flashing lights and certain types of patterns can cause her to have a tonic clonic seizure. I don’t know if you have children, but allow me to share with you the fear and horror of watching your child fall to the ground, usually hitting her head, and quit breathing while she convulses. When people joke about strobe lights or patterns that cause seizures, my 14 year old usually cries at the outright insensitivity.

I found it in poor taste for the “Today Show” to even have a poll about this. Most people voting on the poll have no idea about the intricacies of seizure triggers.

I understand that you were very vocal about Don Imus resigning after his very hurtful and ignorant comments. I wonder if you feel that those of us that suffer with the disease of epilepsy should call for a similar resignation from you. I, for one, am not calling for your resignation. I would like to see you do a spot on epilepsy on the Today Show. Go to an epilepsy center, where there are children whose epilepsy can not be controlled and suffer from many seizures per day. Raise awareness about the plight of millions that suffer with this disease.

If you are truly sorry, Mr. Roker, this is what I would suggest. Raise awareness, so that others do not make the same foolish mistake you did. Raise awareness. Become educated. Perhaps you won’t think it’s so amusing.

Sincerely,
XXX

To hear Mr. Roker’s comments.

That word brings up a variety of societal characterizations. Peppy, silly, brainless. Or perhaps snotty, snobby, bitchy. For my youngest (and eldest, in fact), competitive cheerleading has been their sport of choice. We’re not talking about jumping around clapping your hands. This stuff is athleticism at it’s finest.

At any rate, my youngest has not cheered for over a year due to her diagnosis of epilepsy. She’s not wanted to, either. Fear has had her by the throat. Today, she’s trying out for her High School squad. I feel like vomiting. It’s only a sport, but I want this so bad for her. I think it’s one of the ways she will conquer her fear….

If you don’t think cheerleading is a sport…check this out. THIS is cheerleading.

Just found this site called Goodsearch. It’s powered by yahoo, but every time you do a search, you can earn money for your favorite charity, if it’s listed. I checked it out and decided to donate to the Epilepsy Foundation of America. Check it out and if you don’t have a favorite charity, may I suggest EFA….

I was taking a look at my referrers the other day. Someone did a yahoo search on epilepsy and spiritual warfare and my site happened to be the first to come up, which I find kind of funny, considering that attempting to use “spiritual warfare” to win the battle against epilepsy in my daughter almost made me lose me mind.

We all know that Christians can take the spiritual warfare and “name it and claim it” type of thing too far with illnesses, but try battling a disease that Jesus specifically casts out as a demon in the New Testament. You might as well hang it up. It must be unconfessed sin, or a demon, or a negative spiritual influence, or drugs, or sexual abuse or past use of a ouiji board. Go ahead. Do a search on epilepsy and spiritual warfare or demons. There is no shortage of information out there. I had never considered what it must be like to have a disease like deafness or epilepsy that Jesus uses demonized language to heal. Until recently.

One Christian website actually says that demonic manifestation of a believer can take the form of:

Physiological imbalance & physical inability, such as blindness, deafness, dumbness, epilepsy, faintness, foaming at the mouth, change of voice & character, etc.

OH. REALLY?????? COULD it be that the person is actually blind or deaf or dumb or has epilepsy?

Perhaps if we quit seeing God as a gumball machine that just responds to our every whim and wimper, perhaps if we realize that, as painful as our suffering is, there are others that suffer more, we will stop acting as if every illness, every financial difficulty, every job loss is a personal attack from an enemy that we must battle. Perhaps we will realize, that as Job says in chapter 42,

2″I know that you can do all things,
and that no purpose of yours can be thwarted.
3′Who is this that hides counsel without knowledge?’
Therefore I have uttered what I did not understand,
things too wonderful for me, which I did not know.
4′Hear, and I will speak;
I will question you, and you make it known to me.’
5I had heard of you by the hearing of the ear,
but now my eye sees you;
6therefore I despise myself,
and repent in dust and ashes.”

Last night my husband and I were going to finish up purchasing a few last minute Christmas items. The phone rang; it was my eldest daughter, Erin. She and my youngest daughter, Becca, had left about an hour prior to go to a gym. Becca had a seizure in the car. Erin had pulled over and called the rescue squad. By the time Erin called me, the seizure was over and Becca was shaken up, but ok. Erin was also shaken up. I’ve always had a fear that Becca would have a seizure while I was alone in the car with her. I can’t imagine how scary it was for Erin.

It’s been almost 4 months since Becca had a tonic clonic seizure. This was a set back. I’m not sure what triggered the seizure, as normally, they are in the morning. She has never had a seizure at night. We think that perhaps it was some of the flashing lights on the freeway, as she does have some photosensitive triggers. I hate epilepsy. I simply freaking hate it. Erin said she could not fall asleep last night. No matter what she tried to think about, she found her mind always going back to seeing Becca seizing. It’s traumatic to see. It’s terrifying to witness.

What do you tell your 14 year old daughter? What do you say when she looks up at you with her big blue eyes and asks “Mom, why did this happen again? I’m taking my medicine. Why?” What do you say to your 18 year old daughter when she says “Mom, I just kept wondering how long Becca was seizing before I saw her. How long did I not notice?”

The picture below is my daughter and her best friend, Reagan. Reagan has witnessed several of Becca’s seizures and has been a wonderful friend. Last night, Reagan and Becca cried together. They cried over another lost moment. The cried over the setback. They cried because of epilepsy.

There are thousands of people that do not have control over epilepsy, even with the many treatments now available. Epilepsy is a horrible disease. It affects every aspect of life. I know that it’s Christmas. I know that many have given to (RED)emption. Would you consider making a donation to the Epilepsy foundation? Every penny counts. Every penny has the possibility of making a difference for those who have this disease, and the people that love them. Would you consider posting something on your blog to raise epilepsy awareness, even if you can’t give?

Technorati Tags: epilepsy, epilepsy+foundation

Out of the Shadows is for the millions of people with epilepsy and for those who have a loved one with the condition – like I do.

Join Amy Lee in helping to raise epilepsy awareness, and also to raise some money towards learning more about how epilepsy works, how best to treat it and how to cure it.

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Technorati Tags: epilepsy, evanescence, Amy+Lee, epilepsy+foundation

Lean into the pain. It cannot be outrun. You can’t get around it, over it, under it; you must go through it and feel the full force of it. That is the human experience.

Jesus never promised heaven on earth. In fact, He said that we will have afflictions and tribulations. As the mother of a child recently diagnosed with epilepsy, I’ve been disheartened by some of the responses I have had from my Christian friends.

“God will teach her things through this.”
“He is still on the throne.”
“It could be worse.”

All of these things are true. God will teach her things. He is still on the throne. It could be worse. But none of that is helpful to hear when I need someone to vent to. Epilepsy has changed our lives. We must find a new “normal”. I grieve over her lost health. I worry that she may have to deal with this the rest of her life. I am anxious about the effects of the many medicines she is on…how will it affect her learning? I am fearful that she will get hurt when she has a seizure. I question if we will get her seizures under control. I could go on and on… and I need to. I need a safe place to process these emotions. Being sad does not mean that I do not know the truth. Being sad does not mean that I do not trust God. Being sad does not imply that I’m not Godly enough or that I don’t have faith.

The bible says that God is close to the broken hearted. Jesus wept when Lazarus died. So many came to Jesus to be healed. I never remember reading that Jesus gave them the “what for” or placated them with a trivial adage. He healed them. He touched them and then he healed them. The Greek for healed is therapeuo. I need a little therapeuo in my life. A touch and some healing. For me, that means a listening ear. Someone to be witness to my grieving and my fear.

I recently explained to my husband my feelings. The story I came up with was the following:

I’m driving down the road. I’m at peace with God. The radio is on and I’m humming along. Suddenly, out of nowhere, a truck appears. It’s not a semi, but it’s a big, heavy pick up. I have no time to react. The collision just happens. It spins the vehicle around. Everything in the car is flying around, uncontrolled. The car comes to a stop. I’m injured, bruised and bleeding. I’m still not sure what has happened. “Where did that truck come from? Where’s all my stuff? Is that blood on my shirt?” I’m hoping that an ambulance is on the way. Then, someone appears. “Thank God,” I think, “help is here”. That person, my helper, says to me, “Get out of the car. The accident is over. God is on the throne. It could be worse…you could be dead. Besides, I bet you’ll learn better driving skills from this.”

I’m not even out of the car. My wounds haven’t been stitched. No one has even touched me yet. I still need therapeuo.

Lean into the pain. It cannot be outrun. You can’t get around it, over it, under it; you must go through it and feel the full force of it. That is the human experience. That too, is what Jesus comforts us through. That is, as followers of Christ, what we need to do. Walk with those in pain. Don’t rush it. Don’t give it an adage or quick fix. There isn’t one. We still live in a fallen world. We are still under attack by an enemy we can’t see. There will still be battle wounds. Yes, we are His. Yes, He is on the throne. Yes, one day the lion will walk with the lamb, but in the meantime…

epilepsy faith fear healing hope

Today, I sent my baby to high school. Under normal circumstances, this would be an emotional time. Under current circumstances, I’m a freaking nervous wreck.

On March 23rd, 2006 I received a phone call. It was the school nurse at the middle school.

“Jamie? Hello, this is Norma from XXX middle school. She’s ok, but Becca has had a seizure.”
“WHAT? What do you mean? Is she ok?”
“Yes, she’s fine. Has she ever had a seizure before?”
(COMPLETELY FREAKING OUT BY NOW) “NO! Oh my God! What happened?”
“Well, we’ve called 911 and we will meet you at the hospital.”

Within the following week, Becca had another grand mal seizure, an EEG, another ER visit and an appointment with a neurologist. She was diagnosed with epilepsy. Epilepsy…a term I am familiar with. I remember that there was a girl I went to school with that had epilepsy. I remember seeing her have a seizure. However, I didn’t know epilepsy until now. Now I know it….and I hate it. It’s amazing how little we think of negative things until they happen to one of ours.

This disease has turned me into an absolute nervous freak. Every thump I hear scares me…”is that Becca having a seizure?” When it’s quiet, I’m scared…”is Becca having a seizure?” What if she has a seizure when I’m not around? What is the new normal? Do I let her spend the night at a friend’s house? Do I let her go the movies with her friends? What if she has a seizure while she’s walking down the stairs? What if she’s out in public, has a seizure…I’m not there…and people try to do stupid things like shove something in her mouth to “keep her from swallowing her tongue”?

How do I, as her mother, teach her to be cautious without scaring her? Encourage her to take precautions without turning her into an invalid? “Becca honey, no baths anymore. Only showers. It’s safer.” (remember…she’s freshman in high school). My eldest daughter comes home to find her in the bathtub –ALONE! (as most people bathe). A dear friend of ours lost his sister when she seized in the tub. She drowned. “Becca…I told you, no baths! Honey, you could drown if you had a seizure.” At this, she cries. “Mom, I’m so scared.” Could someone tell me the line between caution and fear?

“God, please protect her today. Let her have a normal day on her first day of high school. No seizures. Put your angels in front of her, beside her and around her. Keep her brain waves smooth and healthy. Protect her from the evil one. Amen”