On Sharing the Gospel

Recently, I attended a social event for work. I interacted with as many people as possible. Then I felt obligated to go and talk with some men on our board. It was clear before I left my comfortable place at the table that these colleagues had NOT switched from alcohol to soda.

“NANCY!” Our board chair from New York City bellowed. “I’ve been talking with the mormons! What religion are you?”

Stunned, I answered hesitantly. I was unsure if this was an opening from God or the ramblings of a very relaxed colleague. “That’s an interesting question,” I began. “My family is Jewish…” I watched as understanding began to dawn in his eyes. “But I am a Christian.” As often happens, confusion settled in. “I don’t get it,” he said loudly. “Are you Jewish or Christian?” “My family is Jewish,” I replied. “But I practice Christianity. I believe in the New Testament. I believe that Jesus is God.” “WHY?” he asked, his face closer to mine than I would normally like. “Well,” I answered, trying to back away. “I had an encounter with God when I was in college.  I believe Jesus died for my sins. And I believe every word of both the Old and New Testament.”

My evening took a sudden and immediate turn. I found myself talking about religion with a colleague who was both overly friendly and seriously inquisitive. I wasn’t sure if I should share the gospel or just excuse myself and head back to my original (and quieter) seat at the table. Before I could decide, my colleague stated definitively, “I don’t believe in eternity. I don’t think Jesus is God. But I think Christianity is great. It makes your life happier. I think anyone who is a Christian will have a happier life. And that’s what it’s all about….”

I looked at my colleague, a respected professional old enough to be my father, and I felt an unexpected anger in my heart. “You speak like someone who hasn’t suffered.” I said to him strongly. “Noone who has suffered can say that Christianity is designed to make you happy.” My voice grew louder. “You tell the mother who has lost her child that Christianity exists to make her happy.  You tell that to the wife whose husband has a brain injury. Christianity does NOT exist to make me happy,” I emphasized. I found my colleague listening to me with a new respect.

“I can walk through my trials because I know God is walking WITH me.” I was surprised at the strength of my words. “Christianity does NOT make me happy. Christianity reminds me that I am not alone in my suffering. Christianity tells me that this world is not all there is, that there will be an eternity far greater than anything I could ever imagine.”

“My faith is not about making me happy,” I continued. “But it is a reminder that there is someone and something greater than anything I can ever imagine, and that one day, that One will lead me into His presence forever. That is eternity. And that is only for those who have trusted in Christ. NOT for those who are happy.”

Faith is by Oswald Chambers

Suddenly, a frivolous evening had become serious. I do not know if my colleague heard my words. I don’t know if he remembers them. But I was profoundly affected. So many people say that it’s OK to believe whatever you want as long as it makes you happy. When confronted with this lie, I couldn’t keep silent. My experience from living with hidden disabilities has confirmed to me that my faith is about everything BUT being happy. My faith makes me secure. It carries me, sustains me, and I know it will lead me home. But if my faith is for this world only, then it is sorely lacking.

Living in constant trial reminds me again and again that my faith is not about ME. It’s about GOD. Faith that only exists to make us happy will never withstand the fiery trials of this world. Faith that is true and real reminds me of the world to come. Faith that is true and real reminds me that Jesus lived, that he was crucified for MY sins, that he was dead and buried and ROSE AGAIN so that I can spend eternity with Him. How thankful I am for His gift of faith. How thankful I am that my faith is about Jesus and what He has done, not about my happiness.

My faith will never stand if it rests on my happiness. But if it rests on the character of God, and on what He has done for me through the death of His Son, then it will never fail. Amen and Amen. Thank you, Lord

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On Sharing a Bed

Despite it’s slightly suggestive title, this post isn’t about marital intimacy.  It’s about what it’s like to share a bed with someone who has seizures.

I have a confession to make.  Even after 21 years of marriage, I can’t fall asleep if my husband is already in bed.

Ben suffered his first seizure in his sleep two months before we were married; his second nocturnal seizure was two weeks before our wedding.  Seizures are loud and they can be violent.  I happened to be in the hotel room to watch this particular seizure, and to watch the 8 paramedics carry him off strapped to a medical pallet (they had to call for back-up because he was resisting so strongly in his half-conscious state).  Despite my love and trust in God, from that point on I have never been able to fully relax when sleeping next to my husband.

Initially, Ben was diagnosed with nocturnal epilepsy.  That meant that his seizures only occurred while he was sleeping.  Like any newlywed, sharing a bed required a learning curve I hadn’t anticipated.  But because of his diagnosis, I found that staying in bed with Ben kept me on edge and never allowed me to fully fall asleep.    Whenever Ben moved, jerked a limb, or made any kind of noise, I immediately woke gripped with fear and panic — waking him, too, in the process.

Thus began a habit that lasted a good portion of my early married life.  I would go to sleep with Ben, then eventually move to the couch where I would spend the rest of the night in blissful, ignorant sleep.  But I always kept the bedroom door open so that I could hear, just in case Ben had a seizure, which he did several times each year for the first few years of our marriage.

Before he acquired his brain injury due to status epilepticus (Ben experienced nine seizures in a row which caused his heart to stop and required that he be placed on a respirator for several days), Ben was a successful trombone player who played with many of the major orchestras in the Baltimore and Washington, DC area.  One time we were on an airplane flying to California for Ben to take an orchestra audition.  The plane was about to take off, and in my half-asleep state I noticed something unusual in my peripheral vision.  Ben’s right hand was stuck out straight and was jerking in an unnatural manner.  His eyes were glassy and his breathing seemed labored and unusual.  Fearing that he was about to have a seizure, I immediately yelled, “BEN!” The passengers around us quickly quieted down and I felt as though all eyes were watching us.  Ben turned, oblivious to the fear he had caused me (and the other passengers).  “Are you OK??” I asked in a somewhat frantic voice.  “I was practicing,” he calmly replied, and went back to mentally rehearsing the music in his mind.  That moment, not too distant from our wedding night, clearly demonstrated the physical fear I felt and still experience when I believe my husband is going to have a seizure.

Since his status episode, Ben has had seizures both at night and during the day.  He takes so much anti-seizure medication that it’s fairly unlikely he’ll experience the same kind of seizures that used to cause us both so much anguish and pain.  Yet still I fear.  I’ve found that the best coping mechanism I have is to fall asleep before Ben comes to bed.  Often this means that we go to bed together, talk a bit, and then Ben leaves to read or watch TV downstairs while I fall asleep.  Then he can come back to bed without disturbing me or my sleep.

Hidden disabilities take their toll in many different ways.  As families, we cope, compensate, and make all kinds of strange accommodations to keep our lives as normal as possible.  In my case, one of the best coping mechanisms I have is to go to sleep before my husband goes to bed.

What accommodations does your family make?

On Being Different

“One of these things is not like the other; one of these things just doesn’t belong…” So goes the old Sesame Street song. Sometimes, I can lean towards self-pity and feel that I am not like those around me, like I am the one who doesn’t belong.

Having a husband with a disability makes me different from those around me. Being the sole wage earner in our house makes me different from my peers at church and at work. Working alongside my husband to help him succeed in spite of his disability can be wearying; I am especially aware of this fact when I am around other couples who talk about their relationships. My marriage is different…and has changed drastically since Ben acquired his brain injury ten years ago.

How often I wish Ben’s disability fit into a neat package — that I could find a support group for people with my issues. There are support groups for caretakers of those with epilepsy. There are support groups for those supporting a loved one with a traumatic brain injury. But I don’t think I belong in these groups. Ben’s issues don’t fit into any neat category. I haven’t yet found a support group for emotionally fragile women whose husbands suffer from seizures and significant short-term memory loss.

I know there are lots of great support groups out there; however, I don’t feel like any of them fully fit where my family is at or where I am at due to my husband’s disability.

It’s easy to feel like I don’t belong.  I think many family members who live with those with hidden disabilities feel like they don’t belong. But the Bible reminds me otherwise:

“…including you who are called to belong to Jesus Christ.” Romans 1:6

I belong to Jesus. And I don’t need any support group other than church to remind me of this wonderful fact!

On Balancing Heaviness in our HeartsWith Hope

Abby and Meg http://www.caringbridge.org/visit/abbystoyupdate

I go through life with a constant, aching heaviness in my heart. My heaviness stems from my husband’s brain injury, his fatigue, and all he’s lost. But it also grows as I peripherally experience the pain of those around me. In January, our church family experienced a tragedy when two young girls were walking on the sidewalk and struck by an out-of-control car. The sixteen year old girl died; the thirteen year old sustained serious injuries including a broken pelvis and internal injuries. Four weeks ago, a dear friend was in a car accident and her 9-year old daughter, one of my daughter’s best friends, was severely injured, requiring immediate brain surgery and over a week of intubation.  Although she is progressing at an amazing rate, she will be in a rehab facility at least until mid-August.

So my heart remains heavy. With my own pain. With the pain of others. Additionally, as I get to know my new co-workers and listen to their stories, I am amazed at the sufferings each of these people have endured. With each new tragedy I discover or experience, my heart feels buried under the weight of living in a fallen world. Suffering falls equally on unbelievers and believers. But it is the hope of saving faith that sustains those of us who believe. It is this balance of living with pain and yet maintaining hope that separates those of us who are Christians.

Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.  –Romans 8:24-25

Sometimes I struggle balancing the pain I feel with the hope I know to be true.

But thanks be to God, who gives us the victory through our Lord Jesus Christ. –I Corinthians 15:57

My prayer today is that the hope we have in Christ not only balances, but far outshines the heaviness in our hearts.

Nancy

On Helping Without Condescending

My last entry focused on the many insecurities I am feeling now that I am working in a new job and out of my comfort zone.  I know I am not alone in my feelings of insecurity.  Families living with hidden disabilities struggle more than typical families with almost every decision we make.  Each day, I need to ask God for wisdom as I decide whether to rush in to help my husband with a difficulty he’s facing or determine whether I should let him handle it himself.  That sounds so easy.  But when dealing with hidden disabilities, it opens up a Pandora’s Box of issues that so many people like me address on a daily basis.

If I rush in to help my husband, I worry that I am enabling him.  If I allow him to handle things on his own, I fear I am being callous and inconsiderate of all the challenges he is facing.

My husband, too, is a huge part of this equation. He is so much more than his disability.  He is a person.  I continually need to take his feelings into consideration.  Naturally, all wives should be considerate of their hubands’ feelings. But Ben’s disability adds another layer to our already bloomin’ onion.  He is acutely aware when my help borders on condescension.  He is painfully hurt when I distance myself from him, whether it is because I want to help him, or, in too many cases, when I just don’t want to get involved.

When I try to help him, he feels as though his own contributions are minimized. I can easily make him feel “less than whole.”  He is dealing with enough issues trying to handle his disability; he does not need his wife (or worse, his children) babying him and trying to do everything for him. But when I step back, he can feel even more alone, as though he is trying to steer a boat without a rudder.  He needs me, but he doesn’t want to always feel like he needs me.  And somehow, I need to provide guidance, support, love — and yes, practical help, without continually acting superior or frustrated…without reminding him that he needs me.

What a weird relationship.

We cannot manage without God.  It is only by God’s grace that we are able to navigate this complex maze of marriage with Ben’s brain injury. It is only by God’s grace that we are able to maintain this family life.  I need wisdom in discerning how to be a helper without being condescending.  I need God’s Spirit to help me model loving care to my husband so that my children do not grow up viewing their father as damaged or compromised.  And we both need God’s Spirit to extend patience and ever-flowing forgiveness towards one another as we make poor choices, hurt each other unintentionally, and forgive each other daily as Christ has forgiven us.

Often I am overwhelmed by what God is calling me to do.  But I know that He WILL provide grace, He WILL provide wisdom, He WILL provide forgiveness, and He DOES provide His Spirit to walk with me as I navigate this unexpected path of hidden disabilities.  I am so thankful I am not walking this road alone.  1 Corinthians 15:57:  But thanks be to God, who gives us the victory through our Lord Jesus Christ.

On Insecurities

Sometimes, God can keep us off-center so that we would find our strength and our hope in Him. This past month, I had the privilege of starting a new job. My new job is exciting and is a very specific answer to prayer.  But it is also EXHAUSTING. Each time I start a new job – and I’ve had plenty over the last few years – I am reminded how much the newness can drain the life out of me. I am adjusting to a new commute (which is not an easy one), new co-workers with all of their quirks, a new environment, a new gym, new insecurities, and tons of new input bombarding all of my senses.

I know it will take a few months to really settle in. But the most unexpected part of this new stage in my life is that I’ve discovered being out of my comfort zone has magnified my insecurities in every area. I feel uniquely off-center — and I am praying that God would help me to find my meaning and purpose in Him, not in my performance or my comfort.

My insecurities at work have also brought to the forefront my insecurities at home. I find myself questioning my parenting at every turn.  In my non-working hours, how much time should I be spending with my kids?  What does that look like?  What should MY life look like?  Where does my disabled husband fit in?  How can I explain to my kids that I sometimes need to spend more time with my husband than with them?

At work, I am trying to find the balance between spending my lunch hour in the break room, where I may or may not develop friendships and get to know people, or rushing to the gym.  Even though it exhausts me to go to the gym, this is one hour where I can feel centered, work out for the sake of my mental and physical health, and focus on managing my depression through exercise.  I feel insecure with each decision I make.

I know it will take months for me to feel connected to others at work.  I know that most of my time both at work and at home is spent feeling acutely aware of not performing at my best.  Right now, I am asking God to help me find my center in Him.  I like my new job and sense long-term potential in it.  But I joke that it doesn’t just have a learning curve, it has a learning hole.  So I come home each day feeling out of my comfort zone; not knowing when I’ll start to feel more confident and more comfortable in my daily job…in my daily world.

My husband recently explained that his brain injury results in his being overwhelmed by insecurity on a daily basis…and this has been going on now for ten years.  His memory loss causes him to live with a perpetual sense of disconnectedness and insecurity.  I am asking God to help me grow in my compassion for Ben as I, too, struggle with these issues.  I sense my need for God more at this point in my life than I have in previous changes.  My desire is to use this time to grow closer to Him.  Won’t you please pray with me that my insecurities and lack of comfort would help turn me to the “father of mercies and God of all comfort, who comforts us in all our affliction so that we may be able to comfort those in any affliction, with the comfort with which we are comforted by God.”  2 Corinthians 1:3-4

On Ways of Thinking

my thoughts higherI love this verse, which reminds me of how limited my thinking can be when it comes to our glorious God. I so often bring God down to my own level; limit God’s actions to my own personal circumstances; and forget just how much greater God’s thoughts are than my own.

But today I write about this verse not in light of God, but in light of my marriage. I know many married couples view life differently.  But I’m married to a man with a brain injury. Ben’s brain is damaged, and often this shows in his thinking. Many times (though not always), he perceives things through the lens of his compromised memory and his impaired cognitive abilities.  Sometimes Ben only remembers the highly charged or overly emotional times of our week, causing him to view things differently than I do. As you can guess, this causes much conflict in our daily lives.

I love my husband. He is my love and my best friend. But his thoughts are not like my thoughts.  And I need to grow in my understanding of his condition so that I can respond to him with patience, kindness, gentleness and self-control rather than responding with emotion and frustration.

It is challenging to remember that my husband, whom I love and respect and treasure, often needs my help to process things unemotionally.  It requires great wisdom on my part (which I lack) and great reliance on the Holy Spirit (which I also often lack) for me to know when to correct my husband’s thinking and when to let it go.  It is a constant battle for me to treat him with respect while still coming alongside him to help him process things in a way that is less emotional, based more in fact and truth rather than on his faulty memory.

My husband is humble.  He knows that he needs my counsel, my care.  But some days he feels more attacked than loved.  Some days he feels that I’ve pointed out his failures far more than I’ve encouraged his efforts. I have so many ways to grow in loving my husband in a biblical manner.  Sometimes I am aware of God leading me how to respond when I sense an argument or conflict over our differences in thinking.  Too often I just respond in anger and emotion, adding fuel to the fire.  I am seeking to give this area over to God, and look forward to seeing Him work in me, to see Him develop the fruits of the Spirit in my life as I continue to respect, love, and care for my husband.

Living with hidden disabilities means that we may think differently than our loved one.  Sometimes our brains work differently than theirs do.  Responding to the many conflicts this can create requires constant reliance on God, counsel from others, and much prayer.  All marriages can be difficult.  But hidden disabilities add another level of work to maintain a loving, healthy, God-glorifying marriage.  Lord, may You work powerfully in this area.

Nancy