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On My Reluctant Work History

April 3, 2013 By 4 Comments

I never expected I would be a working mom. I only wanted to care  for my children and husband, work at home, and volunteer in church in  ways I enjoyed and believed God could use me.

Several years ago, I was pulled away from being a stay-at-home mom and brought  unintentionally  into the workplace.  The situation was not planned … my husband had underestimated the extent of his disability and had  accepted a job with our church that he could not perform.  Ben, a former college music teacher and orchestral musician, was now spinning his  wheels to run our church’s Music Academy.   I am naturally organized and gifted administratively, so it made sense for me to pick up the  administrative portions of Ben’s job.

This arrangement worked well for us for a while.  But then Ben’s seizures started interfering with his work.

After several hospitalizations, it became clear that Ben could no longer work anymore.  I took on more roles in the church and school (my dual  degrees in Music and English education and my administrative giftings  served me well).  I was working a full school day,  administrating the  Music program, teaching Choir and English, and I was blessed to be able  to spend each day in the same school building as my children. My job was a mishmash of things I enjoyed and had been trained in.  Despite  the disjointed nature of my work, I poured myself into it.   I suffered  occasional burn-out, marveled at the unplanned ways I had become a mom  with a full-time job, but daily thanked the Lord that I could work in  the same school where my children attended.   And through it all, I  still believed God would one day heal Ben and I would no longer  need to work full-time.

Then things changed.  The doctors said there was nothing more they could do for Ben.  The school decided they really needed  someone who could teach band.  I was “let go.”   For the first time in  my adult life, I had to find a full-time job to support my family of  five in one of the most expensive counties in the country.  I had no  idea what I was qualified to do.  I have an undergraduate degree in teaching music and a graduate degree in teaching English.  But my  teaching certificates were not current and  I was burned out and  had no desire to teach.

I found a job working as senior staff with an educational association.   It seemed like a great fit.  I enjoyed the work.  But it required that I travel.  A lot.  And each time I traveled, Ben’s health grew worse. No  matter how hard I tried to arrange our circumstances, Ben continued to  have multiple seizures each time I would travel.  I grew weary with all  of the trying.  Trying to arrange family life so that Ben’s health would be OK.  Trying to do my best at work.  Trying to trust the God who had  provided this job for me, while allowing my family to suffer.  It was clear I needed to find a new job with no travel so that my husband could heal.

So I had to find  a new job.  Again.  With limited skills in a difficult economy and a now spotty work history.

God provided a new job for me in government contracting.  I wasn’t  really keen on accepting the position, but it seemed like God had  provide this good job with a good salary to help my family heal.

The truth is, my family is finally thriving … and I am miserable.  I vehemently dislike the industry where I am working.  I have not made a  single friend at my job.  I have watched co-worker after co-worker leave due to the poor environment. I find myself  wondering how I  could have so grossly misunderstood God’s plan for my life.  The truth is, my husband’s health is as stable as it’s been in years. My kids are thriving.  Yet I am withering on the vine in a job that is far from  home and seems to drain away all hope and good feelings I have.

How can I explain what it’s like, to be a working mother almost by accident.  I have really fallen into each of my jobs as a means to an end.  I have never had a chance to ask myself … what do I want to do?  What would I enjoy? What kind of people do I want to work with?  And who would hire someone like me, with such a spotty, unplanned work  history?  And where does God fit into all of this?  Does he even care?

Would you please pray for me?  I have finally realized that I will be the  sole supporter of our family for the foreseeable future.  I would love  to be happy … even fulfilled in my work.  But I feel so guilty for  asking for this.  And God seems so far off.  So I covet your prayers.

~Nancy

Filed Under: discouragement, Prayer, Uncategorized, work

On Grief

January 30, 2013 By Leave a Comment

I think families living with hidden disabilites are always grieving. We grieve lost opportunities. We grieve current challenges. We grieve the pain our family members feel when their disability is the direct (or indirect) cause of pain in their lives. Yet somehow in this grief, we continue to run households and go to work and function as well as God allows. Because our lives appear normal from the outside, many people in the church don’t realize how very painful and heavy the emotional burdens can be for the lives of people touched by hidden disabilities. Many of my closest friends do not fully understand the emotional pain I experience daily, even when things appear to be going well.

This week, I realized how much I’m aching from watching my husband continually suffer. For years I have watched him cry out every time he had a seizure. The seizures are agonizing for Ben. I have also had to watch him in pain with his recent knee surgery … he continues to limp, experience swelling, and walks like an old man. Add to that his recent bout with pneumonia (right before Thanksgiving), and he now wheezes all the time and lost almost all of his remaining energy. Even walking upstairs leaves him winded, short of breath, and in pain with his knee. Surrounding everything is the constant grief we both live with daily because he is not able to work, not able to remember things, and frequently becomes confused or overwhelmed.

Finally, we are both daily aware of my own struggle with working outside the home and not being home to care for my husband and children full-time. We carry a tremendous amount of grief and sadness in our hearts every day. This grief in no way pushes away God’s love or loses the truths of the Gospel. I trust God’s sovereignty. I know He is working all things for good in my life. But I’m also aware on a deep, soul-level, that things are not as they should be. That this world is not what we are meant for.

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you.
(2 Corinthians 4:7-12 ESV)

Grieving but trusting,

Nancy

Filed Under: Grief Tagged With:

On Balancing

January 22, 2013 By Leave a Comment

The holidays are over, and my pants are snug.

I know this is a silly way to begin a post for a blog on living with  faith in the midst of disabilities.  But bear with me…eventually, I  hope to make some connections!

I am a small woman (5’2”). I am certainly not what anyone would call fat, or even overweight. But over the years, my weight has fluctuated up and down a good 10 pounds.

There is one weight where I am comfortable.  I call it my “fulcrum weight.”  When I weigh above my fulcrum weight, I begin to feel heavy and my  pants are tight.  I weigh myself all the time and find that my mood  changes depending upon how much farther away from this fulcrum weight my actual weight lands.  When I am below my fulcrum weight, clothes fit  better and all seems right with the world.

I used to think that hidden disabilities caused me to live on a constant  roller-coaster of emotions which wore me out.  In actuality, I think I  live on the fulcrum.   I never know which way the see-saw will tilt each day. Will it be a good day? Will hidden disabilities rear their head  and make it a bad day? As with my weight, I do feel like circumstances  are always moving one direction. Sometimes weeks can go by and I am not particularly aware of my husband’s disability. Other times, his brain  damage is at the forefront of my mind and affects our life in countless  ways, big and small. When we are on the down side of the fulcrum, I  struggle with fear that things will get worse.  I project into a bleak  future. I desperately don’t want my emotions to be dependent on my  circumstances.  But the reality is that my circumstances DO dictate so  much about how I feel.

Oh Lord, I pray that I would learn to trust You more. You are the anchor  for my soul. You are the giver of all good things. Please help me to  trust your perfect plan, your glorious and unchanging ways.  Please help me to remember that not only are you the fulcrum, you are the board  underneath … lifting, girding, and upholding.

~Nancy

Filed Under: Acquired Brain Injury

On Holidays

December 28, 2012 By Leave a Comment

I have spent the past several years trying to manage my husband’s disability.  Sometimes this management is necessary, helpful, and gracious.  Most of the time it borders on control.

I want to control my husband so that I can control his disability.

I “suggest” when he should eat, when he should sleep, when he should take it easy.  I “remind” him that he fatigues easily, that he might benefit from doing less, from sleeping more.  I limit our schedule so that we don’t overburden him.

I control.

The holidays are a hard time to be a control freak.  So many things to do.  So many unexpected things pop up.  And now we add a new variable…we have family visiting who may or may not be aware of the daily limitations we place on my husband.

I am finding that I can no longer control the lives of those around me.  I am learning to trust God, to trust my husband.  And I am learning that it’s not the end of the world when things spiral out of control or my husband’s disability takes a turn for the worse.  I can trust God with that, too.  Because I have seen that things will come around again and get better.

This holiday season, I am learning to give up control.  My husband’s disability is part of our life.  At times it rules our life.  Other times it’s in the background, like a computer program that is still running but not actively being used.   But I cannot control my husband or his disability.  I can’t prevent him from having seizures.  But I can rest in the promises of our God, who gave up his own control to come to earth as a baby so that he would be beaten and bruised for our sake.  It’s time to give up control and replace it simply with worship.

Worship with me this holiday season as we sing of past, present, and future grace:

From the Squalor of a Borrowed Stable (Immanuel)

From the squalor of a borrowed stable,
By the spirit and a virgin’s faith;
To the anguish and the shame of scandal
Came the Saviour of the human race!
But the skies were filled, with the praise of heav’n,
Shepherds listen as the angels tell
Of the Gift of God, come down to man
At the dawning of Immanuel

King of heaven now the Friend of sinners,
Humble servant in the Father’s hands,
Filled with power and the Holy Spirit,
Filled with mercy for the broken man
Yes he walked my road, and He felt my pain,
Joys and sorrows that I know so well;
Yet His righteous steps, give me hope again -
I will follow my Immanuel!

Through the kisses of a friend’s betrayal,
He was lifted on a cruel cross;
He was punished for a world’s transgressions,
He was suffering to save the lost
He fights for breath, He fights for me
Loosing sinners from the claims of hell;
And with a shout, our souls are free -
Death defeated by Immanuel!

Now He’s standing in the place of honour,
Crowned with glory on the highest throne,
Interceding for His own beloved
Till His Father calls us to bring them home!
Then the skies will part, as the trumpet sounds
Hope of heaven or the fear of hell;
But the Bride will run, to her Lover’s arms,
Giving glory to Immanuel!

~ Nancy

Filed Under: Christmas, Uncategorized

On Finding Meaning

November 14, 2012 By 5 Comments

Sometimes I have a hard time finding meaning in my life with hidden disabilities.

Because of my husband’s health issues (brain injury resulting in memory loss, executive function problems and epilepsy), our world has gotten significantly smaller.  We no longer have friends over or host parties…and it’s not JUST because of Ben.  Initially I said no to these things that were so important to us because I wanted to preserve and protect my husband.  Now I say no because I’m tired, worn out, and struggling with depression.  I miss our friends.  I struggle to find meaning in a world that is just work, work, work, dealing with my husband’s disability and trying to raise three children as God-fearing, God-loving adults in spite of my sin and lack of faith.

Because of our diminishing finances, our world has also gotten larger, in ways that I am not really comfortable with.  My children no longer attend the small, Christian school that they’ve gone to for the past 5 years.  They are in the local public elementary and middle schools; when I show up to events and conferences (when my work allows), noone knows me or my husband and all we’ve gone through…I feel anonymous and somehow frightened.  It felt different when we met at our church school and everyone  knew that we were dealing with health issues, even if people didn’t fully understand what we dealt with on a daily basis.  Now I struggle to find meaning in a world where our children are numbers and our homelife is unknown to most.

My work takes me far from home.  I struggle to find meaning in my life, day after day, working to pay bills and health insurance (almost more important than bills at this point).  My job pulls me away from home for 10 – 11 hours each day (it’s a long commute and I am there for 9 hours).   It is an environment where I need to pull myself together and separate myself entirely from any heartbreaking emotions I may experience.  It is a good job…but it is not remotely fulfilling.  There is nothing about my job that relates to my life, my education, my interests.  I need to pretend to be someone else in order to not become too depressed.  There is nothing in my 8 – 5 job that provides meaning to my life.

This post is entitled “On Finding Meaning.”  Many of us women grew up thinking we would find our meaning in our families.  Some of us, who did not grow up in the Christian community, felt that we would find meaning in our life’s work.  Right now, I am struggling to find meaning.  My family life is challenging and overwhelming.  My professional life is unsatisfying.  My friendships are…well, for any one of you dealing with a family member with hidden disabilities, friendships ebb and wane depending on our own emotional resources and the understanding and complexity of those around us.

So I write this post longing for comments.  How do you find meaning in so much heartache?  How do you find God when everything in your life is filled with pain and unfilled longings and the terrible effects of the fall?  I know that there is so much heartache in other countries and many women (and men) whose lives are not consumed by hidden disabilities write beautiful blogs of trips to these regions and ways to help.  But how do we find meaning in the narrow lives God has given us?  How do we find meaning in the boundaries God has provided for us in living with these hidden disabilities?

Please comment, if you can.  I am definitely longing for input to help me to keep going in my life which sometimes feels meaningless and without hope.  I generally try to end with an encouraging scripture, but today I am asking YOU, the reader, to provide me with the hope that will not fail.

Thank you!

~ Nancy

Filed Under: Hope, Uncategorized, weariness

On Eternity

September 28, 2012 By 2 Comments

Over the past few years, a subtle shift has taken place in my heart. While it happened gradually, I am saddened to realize how worldly my perspective on life has grown.

Ben and I have tried to peacefully accept the difficulties that God continues to hand us. When Ben’s health declined to the point where he had to stop working, we struggled with acceptance. When I began working full-time outside of my children’s school, we wrestled with the reality that our lives looked so vastly different from the rest of the families we knew. When Ben had to surrender his driver’s license, we fought against the tendency to feel sorry for ourselves — and, as I’ve shared before, self-pity is NOT a flattering accessory!

We can easily feel overwhelmed by our circumstances.   I long to be home more with my children.   I long to take dominion over what used to be my kitchen (but is now a place for everyone else in the family to prepare food, clean up “to the best of their ability” and put kitchen items away “wherever they see fit”).  Ben longs to drive, to work, and to pour his energies into meaningful work or service of some kind.

These days, we expend two kinds of energy:  the energy to serve well in roles that are neither our preference nor our gifting, and the energy to fight the resultant depression and self-pity that comes from  just trying to “get by” in these positions..  We look at our circumstances and try to be content.  We look at our circumstances and try to find joy.  Perhaps…could it be…that our heart-shift occurred because we’ve been so busy looking at our circumstances that we’ve forgotten to look to God?

This life is not all that there is, nor all that there will be.

Romans 8:18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

1 Corinthians 15:51 – 58 Behold! I tell you a mystery. We shall not all sleep, but we shall all be changed, 52 in a moment, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, and the dead will be raised imperishable, and we shall be changed. 53 For this perishable body must put on the imperishable, and this mortal body must put on immortality. 54 When the perishable puts on the imperishable, and the mortal puts on immortality, then shall come to pass the saying that is written:  “Death is swallowed up in victory.” 55 “O death, where is your victory?  O death, where is your sting?”  56 The sting of death is sin, and the power of sin is the law. 57 But thanks be to God, who gives us the victory through our Lord Jesus Christ.

Revelation 7:15 – 17

“Therefore they are before the throne of God, and serve him day and night in his temple; and he who sits on the throne will shelter them with his presence. 16 They shall hunger no more, neither thirst anymore; the sun shall not strike them, nor any scorching heat.  17 For the Lamb in the midst of the throne will be their shepherd, and he will guide them to springs of living water, and God will wipe away every tear from their eyes.”

Oh Lord, please give us an eternal perspective in dealing with the tumult and exhaustion that are the result of years of living with these unpredictable hidden disabilities.

What are some of your favorite verses about eternity?

~ Nancy

Filed Under: Bible, Eternity

It Takes A Village

September 12, 2012 By Leave a Comment

Having a family member with hidden disabilities often means that we need to give up our “ideal” version of reality for an altered version of reality.  As a Christian, we need to remember that this different version of reality is not second best, but God’s perfect plan for our lives.  God has reminded me of this truth several times this week in unexpected ways.

For the past few months, my husband’s disability has left him unable to drive.  He also had knee surgery in June and has had to find rides twice weekly to physical therapy.  We’re relying on friends and neighbors much more than we ever could have imagined…particularly since I recently started a new job 40 minutes from home.   At the same time, the children have all started in new schools.  I think I’ve mentioned here before that our kids have attended the same small, private Christian school for the last five years and this year we’ve enrolled them in public school.   My new job has me once again struggling with the strange role-reversal that God has for me and my husband.  Another one of my struggles has been that we would lose the close-knit Christian community in our church school.

Last week, during my daughter’s second week of public school, I received a call from the school nurse saying that my third grader hurt her knee and needed to come home.  I haven’t accrued any leave time at my new job and I was forty minutes away from home.  My husband was home, but couldn’t drive to go get her.  I was tempted to despair.  Ten minutes later my husband called me with a lift in his voice.  “I’m home with Meg,” he said.  “Who gave you a ride?” I asked, confused.   “I went across the street and asked Al,” he replied.  Al has been our neighbor for years but we’ve never really known him.  I discovered that Ben has been building a relationship with him each morning as they wait for the school bus with our other neighbors and their children.  In fact, Al is now on the schedule to give Ben a ride to physical therapy this week.

Today I received a text from a new friend whose daughter is in school with my third grader.  This mom had graciously offered to give my daughter a ride home from an after-school program even though her own daughter wasn’t participating.  Today she texted me with the name and phone number of another mom in our community whose daughter is in the after-school program Meg joined.  “Carolyn will be happy to drive Meg home twice a week,” she texted me.  My eyes filled with thankful tears…I’ve never met Carolyn, and I barely know the mom who had coordinated these rides.

I know it takes a village to raise a child.  I have three children and a disabled husband.  Coordinating rides for my husband and children has left me feeling that it takes a small city to care for our family!  But as our circumstances continue to change, as I am drawn farther from home and our children are drawn farther from the safety of our church school, I see God enlarging our village.  I am overwhelmed with thanks and look forward to meeting new villagers over the coming months.  God is with us, and we are thankful for the ways He continues to surprise us with His care.

Warmly,

Nancy

Filed Under: God's presence, grace, Gratitude, Provision

On Changes, big and small

August 24, 2012 By Leave a Comment

The times, they are a changin…

Living with hidden disabiities has necessitated many changes in our family.  Many of these changes seem to take effect in the next week or two.

In order to eliminate the travel of my previous job that was taking its toll on my family and on my husband’s health, I started a new job in a completely different industry.   Today was my first day, and my head is swimming!

My kids start public school next week…3rd grade, 6th grade, and 8th grade.  We no longer have the finances for them to attend the private christian school where I’ve worked and they’ve attended faithfully for the past several years.

I am not one to second guess my decisions or regret the what-might-have-beens.  But the sheer volume of changes in our life is overwhelming.

However, the biggest, most life-giving change of all, the one I am most eager to share with you:  I took my therapist’s suggestion and started an exercise program.  I don’t think I could handle any one of these other, larger changes without the physical outlet of exercise.

I want to shout it from the rooftop:  “I feel better!”  In the midst of a crazy, unpredictable season for both me and my children,  I have regained some control and significantly helped my mood through exercise.

Who knew that it would be this easy? (don’t kid yourself; it hasn’t been easy at all!).  But who knew that it could be this simple? I am not writing this blog post to gloat, to motivate others, to make anyone feel guilty (been there), or goad others into cheering me on (though you can if you wish).

In fact, I am ending this post with a letter to MYSELF.  A letter to remind myself how to handle changes, big and small:

Dear Nancy,

I am writing this to you on the cusp of your forty-fourth birthday.  You have had a rough year.  Hidden disabilities and life’s continual changes have left you feeling battered and bruised, overworked and exhausted.  You have sought relief in food, in friends, in family, and in therapy.  You have tried multiple medications to “manage” your moods and your shifting hormones.  But here is the clue … you consistently feel better when you exercise.  Nancy, you say you have no time.  I know that you are busier than everyone you know.  And I know that you don’t particularly  like exercise.  You don’t like to sweat.  But the truth is, you FEEL BETTER when you exercise.  You are less depressed.  You feel stronger.  You feel more in control.  YOU ARE ABLE TO WORSHIP GOD more fully.

Keep it up, Nancy.  Exercise.  It will clear your mind.  It will clear your heart.  It will position you to love the Lord your God with all your heart, strength, mind, and soul.  It will position you to move faithfully in a season of many changes.

As our family moves into a new season of changes and firsts, new environments and changing relationships, I am thankful to God that I can strengthen my body and strengthen my mind to help prepare me for these many changes to come.

Hebrews 12:1 – 2: Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, 2 looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.

Nancy

Filed Under: Change, exercise Tagged With: ,

On Acting

August 11, 2012 By 1 Comment

For the past three years, our church has produced a summer youth musical.  My children adore the two weeks of rehearsals.  Over 100 students participate in our original musicals.   It’s exciting to walk through the church and see rooms of students intently focusing on their individual parts.  We have students from Kindergarten through 8th grade participating in various ways:  orchestra, choir, cast, singers, dancers … and an army of high school volunteers who are assisting with everything from dancing to make-up to costumes.

Growing up, I always wanted to be an actress.  As a young child, I was filled with excitement each year watching our high school musical, dreaming of the day when I would be old enough to participate.  As a teen, I attended theater camp for many years and loved being in shows.

Now my greatest role is my life.  A few months ago, when I was really struggling, I wrote in my journal about how I always wanted to be an actress, and how strangely, that desire has been oddly fulfilled as I feel that I am acting every day:  “watch Nancy ACT like everything is OK when she is crying inside.  Watch Nancy ACT happy and joyful when she’s filled with grief.”  But I also realized … the more I act like I am OK, the better I feel.  It’s amazing what control we really can have over our behavior.  There are so many days when I just want to cry and stay in bed.  But I don’t have that luxury … and I know that by simply doing the next thing, with a smile on my face, the help of the Holy Spirit, and a kind word to my neighbor, I am not only acting, but I am becoming the person whom I am seeking to portray.

I hope I win an Academy Award in heaven.

~ Nancy

Filed Under: Emotions, grace

On Finding a Therapist

July 25, 2012 By 2 Comments

How do you find a good therapist?  How do you find a counselor within network, close to home or work, and someone who understands the instability of living in a home where hidden disabilities rule?

I have seen at least five therapists over the past few years … sadly, none of them for more than a handful of visits.  My newest therapist, local and covered by my insurance, has repeated the same theme over our last four visits:  “You need to find something  for yourself. Go to a movie, have dinner with friends, find a new hobby.”  I find it hard to believe that after listening to me discuss my trials and challenges, the instability of our life and the intense pressure I feel due to my husband’s limitations, the best advice she has for me is to go to a movie.  She also has mentioned that she feels I should have my cleaning lady come more regularly, and that I should get a massage weekly … clearly, we’re not viewing things through the same financial lens either.

I feel that I am somewhat skilled in explaining what it looks like to live with someone with a hidden disability.  I have been open about my husband’s seizures, brain damage, and memory loss.  While I do seek to protect our family in a public forum such as this one, I have sought to share everything with a few good friends and with the therapists I’ve seen.  I explain the anxiety I feel at the end of each day when I don’t know what things will be like when I come home from work.  I try to explain the weight of responsibility I feel daily as I work with my husband to provide context for him so that he feels less helpless.

I need a therapist who can help me find coping skills for the powerful grief that underpins all that I do.  I need a therapist who can provide me with strategies to overcome my sinful frustration when I have to repeat yet another conversation or help Ben with yet another simple task.  I need a therapist who can help me learn how to handle the guilt I feel when everyone in my house wants to go out and do something (I am the only one who can drive) and all I want to do is stay in.  I need a therapist who understands the instability of living with hidden disabilities and the profound toll this can take on the caregiver.

By God’s grace, my husband has actually found a good therapist.  He feels that his meetings with her are beneficial and are helping him learn coping skills and strategies to accept the limits God has placed on him.  She is not a Christian, but she respects his faith and encourages him in it.  After praying about it, I do not feel it would be wise for me to see the same therapist he does.

How about you?  Do you have a good therapist?  How long did it take you to find her?  Do you think I should try to see the therapist Ben has seen, or to look for someone else?

Or, perhaps, do you think I should just join a book club, spend more time knitting, and go to the movies? –  If so, please call me and we can go together to see the latest chick-flick!

~ Nancy

Filed Under: Acquired Brain Injury, Epilepsy, questions
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