On My 23rd Anniversary

A good name is to be chosen rather than great riches,
and favor is better than silver or gold.
Proverbs 22:1

This Saturday marks my 23rd anniversary with Ben. Come Saturday, I will have been married for half of my life.

Eleven of those 23 years have been marked by Ben’s disability. Yet despite struggles and hardship, we have remained committed to one another. At times we’ve both faltered (and fallen) under the crushing weight of Ben’s brain damage. But we’ve made it 23 years! Ben is my best friend. He is my hero. He is the one who says, “I’m on your side,” when I am struggling. He is the one who daily lifts me up in prayer. I am so blessed to have been married to this man for half my life. I cannot imagine my life without him.

Happy Anniversary, Ben! I am so thankful to share this life with you.

On Bending and Breaking

When I think back to my life and my personality before Ben’s seizures, I possessed such a strong ability to calm myself. Even in the midst of learning about his condition and diagnosis, I was able to tap into a deep well of almost zen-like calm. I innately possessed the ability to be fully present no matter how distressing the circumstances; to put worries about the future out of my mind. Now I have no such self-calming mechanism. I carry my worries with me all the time. I walk hand-in-hand with depression, carrying my grief on my sleeve. When things go wrong, it seems all my emotions are right on the surface, ready to overtake me with their neediness and pain. I can no longer mask my emotions or hide my pain.

I still have scripture. I still have prayer. But I also have 12 years of grief and uncertainty and those years have changed me. With each new pain, I experience all the pain of years past. I can no longer isolate my emotions or keep unpleasant ones at bay. I believe that part of mental illness – in my case, deep depression – is experiencing ALL emotions all the time. I would like to go back to the time BEFORE, the time I was able to isolate my emotions and only experience the ones appropriate for the moment.

Living with family members with hidden disabilities can cause us to bend and to break depending on the circumstances. We need to be patient with ourselves, to allow ourselves the time to grieve and understand our responses are not always perfect. But they are always able to be used by God for His glory, even if we do not understand why. And we need to remember that when we break, He is right there with us to heal us and put us back together. He, too, had scars on his hands. He understands our scars.

On Cumulative Stress

I read the most wonderful article this morning that I think applies to those of us living with families with hidden disabilities: The Theory of Cumulative Stress

It is not uncommon for me to spend long hours sleeping on weekends. Often I get sick on weekends (this past weekend I was laid up in bed with a fever), while I seem to be less sick or able to push through on weekdays. I like the idea of calling the story behind my weekend crashes the “theory of cumulative stress.”

This article helped me to see how this is simply my body reacting to the cumulative stress of trying to manage a full-time job, three children in very different stages in life, a husband with an acquired brain injury, a home, and my workouts – which, while they do rejuvenate me and help manage some stress and depression, can also lead to physical fatigue and burnout.

I am trying to find creative, useful ways to refuel without encroaching on my time with my family or my job (or my workouts). I am paying more attention to what activities “energize” me. Sometimes, I feel that there are no activities that energize me, only the constant drain of the life of a busy working mom. Other times I am able to peer through the fog of emotional and physical fatigue and remember that I do have activities I enjoy. I need to make a conscious effort to engage in these activities to refresh and refuel my weary soul.

I joined a new Bible study in our church, and even though it’s challenging to drag myself to yet another weekly meeting, I have noticed the nuggets of wisdom I learn about God in these weekly meetings stay with me and encourage me through the week. I am making a conscious effort to reach out to friends, even if it’s just sending a brief text or email. And I am trying to plan date nights with my husband where we can go out and talk about real things…anything but our schedules, his disability, and our fatigue!

Sleep, nutrition, and laughter help, too.

This article helped me to realize that I need to be more proactive about cumulative stress. I need to deal with my fatigue and/or burnout before it stops me in my path. And I also need to be gracious with myself when a weekend rolls around and I spend more time resting, reading, or sleeping than I would like. I need to remind myself that this is my body’s way of recovering from the cumulative stress of the week.

I am reminded of the story of Moses in Exodus 17:11-12: “So it came about when Moses held his hand up, that Israel prevailed, and when he let his hand down, Amalek prevailed. But Moses’ hands were heavy. Then they took a stone and put it under him, and he sat on it; and Aaron and Hur supported his hands, one on one side and one on the other. Thus his hands were steady until the sun set.” We all need to find activities that can act like the stone to hold us up, and the support of people like Aaron and Hur, to help us manage cumulative stress.

Nancy

On Rocking the Boat

Many parents with children who suffer from hidden disabilities struggle with allowing their children to grow…helping their children spread their wings, try new things, and even watching their children occasionally fail and learn new lessons as they venture into adulthood.

Not so this wife. My husband’s disabilities are hidden, but his seizures are not. He can stretch his wings…but if he takes on too much responsibility or attempts too many new things, we experience the very real consequence that he may have a seizure, thus incurring more damage to his already fragile brain.

This week I will be traveling for work. My husband will be forced to spread his wings as he parents alone for five days, juggling the activities and emotions of an extremely active elementary school daughter, our people-pleasing middle school son, and our emotional daughter in high school. I will be on the sunny beaches of Marco Island, Florida, balancing work, enjoyment, and trying to manage my family from afar.

I am trying not to “borrow trouble,” as I’ve heard many people refer to worrying. I am trying to be thankful that I can take such a luxurious trip with coworkers I genuinely like. But I know that I am worried. I know that I fear.

During the last few trips I’ve taken, which have been few and far between, I’ve been acutely aware of how much my  husband relies on me. This reliance is not a burden or a weight of which I’m often aware; it’s our way of making our marriage work in the midst of hidden disabilities. My presence, even when I don’t get out of bed, is enough to help provide Ben with a comfort and security he lacks when I am gone. I am a grounding force in his life. My husband suffers from severe memory loss and loss of executive function, so I serve as both the collective memory for our family and as the planning queen (can that be a new title? Do you think Abba will sing a song about me?). When I am gone, he feels my absence acutely. When I am around, I am like a computer program that is running in the background…not easily visible, but active and ready should a need occur. I provide my husband a sense of stability and security on a daily basis. My leaving for five days stirs up great unease in my heart.

I am trying to trust God. I recently read this in Streams in the Desert, one of my favorite devotional books:

The secret of living in perfect peace amid the hectic pace of daily life is one well worth knowing. What good has worrying ever accomplished? It has never made anyone stronger, helped anyone do God’s will, or provided for anyone a way of escape out of their anxiety or confusion. Worry only destroys the effectiveness of lives that would otherwise be useful and beautiful.

My prayer is that during this trip, while my concerns are very real and the disabilities may not always be hidden, I can trust God and rest in Him. Things at home will not go perfectly. The routines Ben and I have established to manage his disability may be shaken. But God is still in control. He is still the supreme healer and lover of our souls, and anything negative that happens has come through His perfect plan.

I will be meditating on Philippians 4:6 – 7: Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Won’t you pray this with me? For all of us living with family members with hidden disabilities. Amen.

On Depression and Insecurity

I have always been a fairly secure person. Fear of man (the biblical term for “people pleasing”) has never been an issue for me. In fact, one of the strangely challenging issues I’ve faced my entire life is that I seem to come across far more confident than I really am.

But now…depression. (Isn’t that the very opposite of the Bible’s many statings of “But God…”?).

I have become aware that my depression has caused deep, powerful feelings of insecurity that are overwhelming and making me feel powerless. I feel insecure all the time. I do not feel like I have anywhere “safe.” I also feel powerfully alienated from people and quite disliked…all new feelings for me. I know in many ways I am at fault. My depression has led me to cut myself off from my friends to hide in my own misery. Now I feel like I’ve lost all my friends and all of my safe places due to my depression.

My house is not a place of rest for me as my depression and circumstances have not allowed me to take ownership of my home.

Work feels like a battle ground each day, which it may or may not be.

My unusual homelife leaves me feeling alienated from my co-workers, who seem active and engaged in life and their communities while I am not.

Ben (my husband with brain injury) has helped by encouraging me to be a “Golden Retriever,” our favorite breed of dog. He has encouraged me at work to insert myself whenever conversation is taking place where I can participate…even if I am feeling badly about myself or don’t want to participate for fear of rejection. But each time, I feel I am taking a risk, stepping out of my comfort zone and having to consciously, painfully participate in conversation and insert myself where I may or may not be wanted — something that is terribly challenging for someone who is depressed.

Then I come home to a house where I feel out of control.

Again, I do not know how much I can trust my feelings. They stem from my depression and seem determined to keep me down. Yet part of being depressed is this awful loss of self-esteem. I feel it most acutely at work, but I also feel it at home …and at church, where I often don’t even want to go because I feel so “different” from the majority of people due to home and life circumstances.

I do not want to stay where I am, living as a slave to my depression and insecurity.

Depression can leave us feeling isolated, unsure of ourselves, and alone. Hidden disabilities can also do the same. Thankfully, I have found a skilled therapist who is helping me find coping mechanisms for these deep feelings of insecurity. May I encourage you if you are in this same situation to acknowledge your feelings of insecurity and to find a qualified, trained, and able professional to help you find coping mechanisms for these feelings?

I know that my circumstances will not change. But my feelings about my circumstances need to change. How thankful I am that I have a God who walks with me both through the circumstances and through the ever-changing range of feelings and emotions. And I am very thankful that He has led me to a skilled counselor and to the right medications to help me to deal with these powerful feelings.

My prayer is that we would all be open and honest about how depression affects us, and that we can seek the help we need. Living with hidden disabilities affects each of us in different ways. But our God is the SAME God, and He WILL provide us with godly counsel, help, strategies, and care.

On Vacationing with a Neurologically Disabled Family Member

My family just returned from a vacation at the beach. We enjoyed rest, relaxation, gorgeous weather, and huge waves. We also had a chance to catch up with some old friends who were staying at a local beach during the same week.

I am overwhelmingly thankful to God for our vacation.

BUT (yes, there is always a “but” with hidden disabilities) … I was made painfully aware once again of how my husband’s disability impacts his daily life. In the “real world,” our lives are carefully choreographed to minimize disruption and change. And I realized regardless of my own desires, I need to try to recreate that environment on vacation.

We rented the same beach house we rented last year. This rental is a blessing to us and we enjoy it immensely. But early in our marriage, Ben and I determined to find new places and new experiences to enjoy together. We traveled extensively (how thankful I am for those early days of our marriage!). We never went to the same restaurant twice. We were adventurers, explorers, venturing together through life while enjoying the unfamiliar and the unknown. And we never stopped saying, “The earth is the Lord’s and the fulness thereof; His people and all who dwell in it.” (Psalm 24:1).

Now that hidden disabilities have entered our lives through my husband’s seizures and subsequent brain injury, our lifestyle has changed. Instead of being explorers, we thrive on routine. As I said, our lives are carefully choreographed to minimize disruption and change…key elements of vacation.

On vacation, my husband’s disabilities kicked into overdrive. He would leave the beach each day by noon to return to our rented townhouse. Then he would shower and sleep for several  hours…hours that left me in charge of the children, trying to plan an afternoon filled with experiences and memories.

When we returned to the townhouse, Ben was usually sleeping. He wanted to stay in for the rest of the day…cook dinner, relax, watch some TV — all the same things he would normally do at home. I wanted to go out, see the town, walk amidst the crowds and enjoy the novelty of being in such a different environment.

But hidden disabilities require that I make sacrifices for the one I love. Because of Ben’s lack of executive function and initiative, I need to plan all of our activities. Because of his constant fatigue, I need to build in times for him to rest and recharge. And I know God calls me to do it joyfully (And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him. Colossians 1:13).

I am so thankful that God gave me an understanding spirit with my husband on this vacation.

Our vacation may not have been a dream vacation. It may have too closely resembled our beach vacation last year (which Ben only vaguely remembers). But we spent it together, enjoying one another’s company. And that, my friends, is what trusting God is all about. Not looking at life the way we want it to be, but looking at it the way it is. And then moving on, with faith, that the Lord’s plan is not our plan and we can rest in His love and care for us.

On Stepping Outside Comfort Zones

Recently, my husband has begun stretching his boundaries. What a wonderful experience for him as he is able to try new things, learn what he can and cannot do, and begin finding things he really enjoys that do not bring harm to his fragile brain or our family’s well-structured, neuro-atypical affirming lifestyle.

Unfortunately, I am freaking out.

OK, clearly I am being too extreme. But it is hard for me to watch my husband try new things. I think this is a common refrain on this blog. So many of us have children (or spouses) who are stretching their wings, trying new things…and we need to sit back and watch, letting God control whether they succeed or fail.

There are huge consequences should my husband stretch himself too far. He puts himself at risk for seizures, thus causing more brain damage. He puts our family at risk for tension and instability. I need to grow comfortable with these consequences. Otherwise, I am putting my husband in a box, limiting what he can do and potentially limiting his happiness and satisfaction with his life.

I don’t want to limit my husband. I don’t want to temper his enthusiasm. With God’s help (and the help of a phenomenal therapist), Ben is trying to be wise in how and when he extends himself. He is seeking to grow in his enjoyment of life and his ability to find success in new activities despite his neurological challenges.

In this case, I am the problem. I am letting the difficulties of the past cloud my hope for the future.

I need prayer. I need to remember that nothing that happens is outside of God’s plan for me. Or my husband. Or our family.

I need to accept difficulties and failures with grace. Thankfully, we have yet to experience any disruptions or difficulties due to my husband spreading his wings. But I fear. And I need to remember that God is in control, not me. I need to realize that any challenges that arise are God-ordained and I can handle them.

Recently, I found a quote regarding stress that sums up how I feel:  “Stress is a condition or feeling experienced when a person perceives that demands exceed the personal and social resources the individual is able to mobilize.” How thankful I am that I have spiritual resources to help me deal with my fear, my worry, and my stress. How thankful I am that God promises never to leave us or forsake us.

I need to cling to these reminders in this time of stepping outside of our comfort zone. How thankful I am that God is bigger than my own comfort!!

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.”

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

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!