Three Months Seizure Free

Time for a quick blog update.  It’s been a long time since I’ve posted anything on here.  But lately I’ve been made aware that there are many people who have been faithfully praying for my family, and we are so very thankful for these prayers.  So I want to provide a quick update and share a praise.

It has been more than three months since Ben’s last seizure.  We are overwhelmingly thankful to God for this reprieve.  More importantly, Ben has had a real change of heart towards his situation and towards God.  He’s taken his heart to task and come to terms with ongoing disappointment and fear in regards to his seizures and memory problems.  While Ben still struggles daily with a sense of overwhelming loss, he is learning how to trust God in the midst of these feelings.  He is seeking to be faithful to God where God has him, rather than focusing on what he’s lost or where he wants to be.

We’ve found that as long as Ben gets sufficient rest and doesn’t participate in activities that overwhelm his brain (like work or other things that require sustained concentration or working memory), he is able to remain seizure free. He is giving a few guitar lessons out of our house and is tuning several pianos each week, a skill he’s recently learned.

I am happy for this new normal in our home.

ICorinthians 15:58

Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain.

 

 

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Freaky Friday

On Saturday night, our family was sitting around the TV eating pizza and preparing to relax with a movie night.  We couldn’t find any movie that we all wanted to watch, so we browsed through the TV and found that the movie “Freaky Friday” had just started.  The newer one with Jamie Lee Curtis and Lindsay Lohan.

Now I know that Lindsay Lohan is not any kind of a role model for my children (or for me, or for anyone).  But I have to admit that this is just a really fun movie that everyone in our family enjoys.  We’ve probably all seen it at least 4 times…yet somehow, we always enjoy watching it again.

But this time when I watched it, I had a completely different response than I’ve had in the past.  I kept watching Mark Harmon, who plays the fiancee to Jamie Lee Curtis.  When JLC (the mom) switches bodies with LiLo (the teenager), you watch this older woman on the day before her wedding whose behavior changes completely.  Of course, her behavior changes because her daughter is inhabiting her body.  But Mark Harmon doesn’t know this.  There are many scenes in the movie where you watch Mark Harmon just staring in utter confusion at his fiancee, whose behavior is so radically different than what it has previously been.  He shrugs it all off to pre-wedding jitters.  Time and time again, I found myself watching the Mark Harmon character instead of the two main leads.

The thing is, I completely and totally understand how he feels.  I know what it’s like to watch someone close to you “become” someone else.  I know what it’s like to watch the person you love the most in the world act in a way that is totally and completely out of character with who he is.

That’s what Ben’s seizures do.  They impact his brain and cause enough changes in his behavior to leave me stunned and wondering, “who is IN there?”

The brain is an amazing, incredible organ.  I am frequently amazed at how Ben’s seizures impact pretty much every part of who he is.  When his brain is misfiring, his posture changes, his tone of voice changes (much like Jamie Lee Curtis’s posture and voice changed when she played her teenage persona in the movie), and his behavior changes.  His sleep patterns change.

So this is another post that likens our life to a movie…much like my post on “The Princess Bride” drew correlations between our life and that well-loved movie.

What movies does your life remind you of?  I’d love to hear!

On my background…

I was talking with someone recently, and she was asking me a little bit about the trials I’ve walked through over the past 10 years.  I mentioned that my Mom died 8 years ago after a long battle with cancer, then my dad was immediately diagnosed with cancer, then Ben got sick…

She wondered if anything in my background led or prepared me to become a caretaker.  She said a lot of people have been placed in the role of caretaker their whole lives, or have prepared for caretaking careers like nursing or teaching.

I laughed.  And then I laughed some more.  I think this is one of the reasons why this whole thing with Ben is so strange for me.

There is absolutely nothing in my childhood that has prepared me for the life that I am living now.  You see, like most little girls, I was raised raised to be a princess.  Specifically, I was raised to be a Jewish American Princess.  And JAPs are not trained or prepared to be caretakers.

Of course, nothing in my background prepared me to be a right-wing Christian, either.  But that’s another story…

Please continue to pray for Ben.  I feel like the seizures are walking very closely alongside us now.  They’re not active, but it’s like a volcano whose activity is ramping up.  There are many, many rumblings.  I am praying for these rumblings to stop and for his brain to calm down.

Mystery and Victory

I took Ben to the ER on Tuesday night because he started having seizures.  They gave him an infusion of IV anti-seizure medication, and he has been fine ever since.

I feel like I should give some brief background here.  When Ben started having uncontrolled seizures several years ago, his seizures came in clusters.  The clusters lasted about 4 – 6 days.  Again, he was having complex-partial seizures and not full convulsions, so it took a long time for me to realize exactly what was going on.  And Ben’s seizures have never really fit the “textbook” definition of seizures.  They’ve always been a bit unusual, a bit different from what the doctors would say is typical.

Several years ago Ben started to go through days where he would be completely and totally under the influence of these seizures.  The seizures would go on for a few days, and then he would return to normal.  As the seizures got worse (despite trying many different medications and combinations of medications), the clusters would last longer.

Early last year, it was clear that the seizures were “winning.”  Ben appeared under the influence of abnormal brain activity far more than he wasn’t.  By April it was obvious to me that if he started having seizures, the seizures would not stop on their own at all.  It was clear that he was undergoing regular non-convulsive status epilepticus.  He needed significant medical intervention in order to stop the seizures.

For some unknown (and wonderful) reason, Ben has been seizure free for almost 6 weeks.  But on Tuesday night when I came home, I could see immediately that the seizures had returned.  I watched Ben have at least 5 seizures in just a few hours.  In each case, he insisted vehemently that he was not having seizures, he was just “going through a rough patch.”

Even though Ben was unwilling to admit the severity of his condition, I decided that the best thing for us would be to go immediately to the ER and have Ben treated with some intravenous anti-seizure medication.  Large infusions of this medication have been the only thing that have stopped Ben’s seizures in the past.

At first Ben resisted.  Then he seemed to agree to come to the hospital with me.  But it still took me over an hour to get him into the car.  We went to the local hospital, where we spent 5 hours waiting for lab results and giving Ben an infusion of intravenous dilantin.  By the middle of the process, I could tell that the seizures had broken and Ben was back to normal.

Ben woke the next morning with no memory whatsoever of most of the events that had transpired the night before.  He felt disheartened and thoroughly defeated when he realized that the seizures had come back and that he hadn’t been able to stop them.  I, on the other hand, felt empowered.  This is the first time that I have brought Ben into the ER on the first day of his seizures.  It never occurred to me that I could shorten his seizure clusters by treating them in the ER immediately.  I feel as though we gained days, if not weeks of our life back.

We met with Ben’s neurologist at Hopkins this morning (believe it or not, we had a previously scheduled appointment), and discussed the situation with him.  At this point, we are going to continue with Ben’s current treatment but we will monitor his medication levels much more closely.  The thing with seizure meds is that they all work differently.  With some of them, you really can’t do much to see if they are working other than trial and error.  With other meds, you can check bloodwork and see if the level of the drugs is sufficient to be effective.  One of the four anti-seizure drugs Ben is regularly on can be monitored by blood-level.  This is the same medication they give Ben intravenously when his seizures cannot be stopped in any other way.

So finally I feel as though I have an “out.”  A way to prevent days, if not weeks, of Ben having seizures.  I expect we may be making more trips to the ER.  But instead of being a last option, this is a great victory in the way of treating Ben’s seizures.

ICorinthians 15:57 – 58

But thanks be to God, who gives us the victory through our Lord Jesus Christ.  Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain.

On Identity

I want to state from the outset that I am thrilled by this reprieve we’ve been given with Ben’s seizures.  I am so thankful to have my husband back with his personality fully restored.  It is such a wonderful blessing not to have to watch Ben suffer the agony he experiences when he has multiple seizures.  But at the same time, I’ve learned something about myself recently.  I’ve learned how comfortable I’ve grown in the role of being a caretaker.

For a while I was clearly experiencing what is known as “Caretaker Burnout.”  At times I have felt drained and depleted, both emotionally and spiritually.  But now that the seizures are gone, I don’t really seem to know how to function anymore.  I don’t know what my role is.  We’ve been going through this trial for so long that I have become at home in the role of caretaker; I am used to always living in crisis mode.  The reality that I’m used to, the place I’ve grown to be comfortable in, involves Ben doing poorly and me reaching out to others for comfort, sympathy and support.  This is my reality.  This is my identity.  I know how to live day-to-day with Ben’s illness front and center in our lives.  It’s a lot less familiar for me to live normally.

I am embarrassed and humbled to admit that part of me is having trouble adjusting to our “new normal.”   My identity has become wrapped up in being a caretaker.  Ben not having seizures…this place is unfamiliar for me and feels foreign.  For so long now, I have walked around carrying Ben on my heart.  When I wasn’t home with Ben, I was continually aware of where he was and how he was doing; always wondering if I should change my plans or adapt my expectations due to his health.  Now I don’t need to think about these things.  Now that my circumstances have changed, I feel as though my identity needs to change along with them.

And then I remember that my identity is supposed to be rooted in God.  My identity is as a child of God, loved and cared for and forgiven.  How did I forget that along the way?

I know the seizures are walking alongside us.  Even if they’re gone, they’re still in the background, like an open computer program .   I will play the role of caretaker again.  But I need to remember that my identity is not rooted in my circumstances.  My identity is rooted in Christ.

Galatians 2:20

I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.

**Note…this post was written last night, before circumstances changed. Please pray for Ben.  Thank you.

Laughter during Tears

Today I was riding in the car with Ben and we were talking about how he wants so desperately to work; particularly in the field of music.  I wanted to encourage Ben, but at the same time I do believe that one of the reasons he’s been seizure free for so long is because he doesn’t have the stress of working.   In an effort to help him understand the unbelievable challenge of the past two years, I strongly stated: “You don’t really understand how difficult it’s been with you working and having seizures.  The past two years have been hell!”  (profanity used to emphasize my point).  I didn’t know if my words would upset him or discourage him.  But Ben just looked at me for just a moment, and responded with an ironic smile, “Maybe Hell is worse.”

I share this story to illustrate what a wonderful, positive attitude Ben has had for the past few weeks.  The kids and I have been moving full-throttle ahead going back to school and to work, while Ben is, well…home.  He is not working, he’s not driving, and now that his brain is calm and he is fully recovered from the last round of seizures, he is starting to become genuinely bored.

“Self-pity is not a flattering accessory.”

I am so thankful for a husband who is trying hard to maintain a positive attitude and please God in this season.   I am thankful that Ben is leading our family in trusting in the Lord during this time.  I know that this is not an easy time for him, and that it’s hard for him not to feel self-pity.  If Ben were actively having seizures, he might be able to understand a bit more why he is not working.  We praise God that he’s not having seizures (yes!  yes!).  But it does make this time in our life somewhat perplexing for us.

Would you please pray with us that God would show Ben things that he could do in this season that would be fulfilling for him professionally, but would not lead to seizures?

I will close with some other wonderful, quirky things that Ben has said regarding his health condition.  Now that I think about it, Ben does have a way with one-liners:

  • One time when Ben was in the throes of a seizure cluster, our pastor was praying for him.  Ben had been having seizures for days, and he was tired and worn.  Our pastor gently put his hands on Ben’s shoulders and prayed to the Lord, earnestly asking God to stop all “brain activity.”  Ben quickly interrupted the pastor’s prayers and  cried out, “Not ALL!” (so our pastor prayed to stop abnormal brain activity)
  • Another time we were in a meeting with some musicians from our church, discussing plans for our Music Academy Summer Musical.  Everyone in the room knew Ben well and was familiar with his memory problems.  One person referred to how we had done things the previous year, and the director said “Oh well…hindsight is 20/20.”  Ben looked at her angrily and strongly stated, “Not for EVERYONE, Patti!”
  • A few weeks after he had his status seizures in 2004 and lost his memory, Ben and I were in the house with some friends.   There was a lull in the conversation during which Ben violently sneezed.  His sneeze was so loud and forceful that we all looked up, rather shocked.  Ben also looked surprised, and then proclaimed loudly, “My memory is back!”

Thank you, God.  For laughter in the midst of tears.  For joy drawn from Your presence never leaving or forsaking us.

From Streams in the Desert

Streams in the Desert by L.B. Cowman is one of my favorite devotional books.  I strongly recommend it for anyone looking for a good daily devotional.  Crosswalk.com has it posted online, but for some reason the entries there are not in the same order as the ones in my dog-eared, much highlighted hardcover, edited by L.B. Cowman.  Here is something from today’s reading (in my hardcover edition):

Streams in the Desert, September 7th:

“There are two ways of getting out of a trial.  One is simply to try to get rid of the trial, and then to be thankful when it is over.  The other is to recognize the trial as a challenge from God to claim a larger blessing than we have ever before experienced, and to accept it with delight as an opportunity of receiving a greater measure of God’s divine grace.”

My biggest desire right now is that Ben and I would draw closer to God.  We are entering a very new season of life…one where I will be working, out of the house, almost full-time.  And Ben is home, not working and not driving.  It’s a mystery why he is not having seizures.  This mystery leads us to ask all kinds of questions — why NOW?  Should Ben be pursuing some sort of work?  Or have the seizures stopped because Ben has been experiencing such a slower pace of life?   Would working throw him back into the endless cycle of seizures that he had experienced for so much of last year?   And what can Ben do while he is home to help him navigate the tightrope that seems to exist in his life between boredom and stress?

Our prayer is no longer to get rid of this trial, for we realize that simply “being seizure free” does not mean we can quickly and easily return to our previous life.  I sometimes feel like the seizures are walking alongside of us, ready to return at any time.  Ben and I need to continue to walk in faith and wisdom, trusting God, trusting the doctors, and trying to make wise lifestyle decisions for our family.  But most importantly, we need to accept our life “with delight as an opportunity of receiving a greater measure of God’s divine grace.”  Being seizure free does not automatically draw our hearts closer to God.

My desire is that we would use this time of stability, regardless of how long it lasts, to strengthen our faith.