Guest Blog: Hope is a Four-letter Word

friend or foe

As told by Bill Gunnin

Hope is a four-letter word.  Most people think of it as a positive word, a word that looks forward.  For me, with my head injury, it is a word that makes me sick.  A tormenting word, which never works out for me.  Most of the time the feeling I have is one of being heartsick.  Inside, I have so many thoughts and so many things I want to do.  I am about to explode with things I have to give, but I have nowhere to give them.  I am a unique person and I have talents and so much inside of me, but there seems to be no outlet for them.  People say these things to me, have words for me, and tell me how there are plenty of places for me to use my gifts. I gain so much hope because it stirs inside of me.  I am a visionary, but then nothing comes to pass and there is not fulfillment, so I get heartsick. It is a terrible cycle to live with over and over and over again.

I feel like God is calling me to great things but it feels impossible, because I don’t know what to do to get there. I see ahead, but the steps are invisible to me.  I have these limitations, which I am just now beginning to recognize.  I am limited.  I know God’s not limited, but I am.  It’s like wanting to be the president of a company right out of school.  I see the big things that need to be done, but I have no experience or ability to do them.  What I have to give is distinctive…there is no one else like me.  There is not someone I can follow.  What I see is unique and no one has gone there before.  So, I feel on my own to figure it out.  In order to get where I want to go you have to have experience, background, or education, in order for doors to open.  I feel I am 30 years too late.  I am finally trying to do what I should have done 30 years ago.  Find a career path, follow it to do something I want to do, but the last thirty years do not open the doors of where I want to go now.  On paper, I don’t look very good.  And there is frustration that most people don’t even understand me.  I don’t feel like I get any credit for any of my hard work in the jobs I have had.  It didn’t matter how hard I worked, or how productive I was, I was skipped over for advancement time and time again.  Part of my frustration is that I am unnoticed and I have a fear that I have left no impact where I have been.  So, I can’t help but second guess everything I have done in my past.  I have some regrets and I feel I have blown it and missed opportunities.  It makes it hard to see the opportunities that are available.  I still feel all alone in it.  Heartsick.

Everybody knows the verse in Proverbs 13:12. I have the first half of this verse memorized, but now I am looking at the second part that most people do not remember.  “Hope deferred makes the heart sick, but desire fulfilled is a tree of life.”  Hope and desire are linked.  Hope is related to what you desire, being accomplished.  The totality of man’s inner nature…the heart..is where the deepest innermost feelings reside. Different translations say it differently. The message says, “Unrelenting disappointment leaves you heartsick, but a sudden good break can turn life around.”  Or a longing fulfilled.  All I know is that there is no longing fulfilled and it seems there are very few good breaks that come my way regarding what I want to do.

What I do know is this…Hope deferred afflicts my soul…my heart.

So here I am again.  Looking for a job again, for what feels like the millionth time. It’s like now I am seeing things as brand new.  In some ways, I feel like a kid right out of college, with the world at my feet and so many directions. I can start fresh and begin again. Yet I have trouble with making decisions and finding directions…and I have this hope that has never been fulfilled, so I have trouble hoping. Hope is a bad word to me.  So instead of hoping, I feel like crying.  I have a desire, even, to cry it all out to release the burden of it.

Every single time, I get stirred up inside in my spirit man and a gift of faith or calling from deep within rises up.  But with the excitement, there is a shadow over it that knows this desire is strong, but I will go nowhere with it.  Hope feels like a trap to me.  It’s different from the wall that I cannot get over…instead it feels more like something hanging over me…like a roof or ceiling where the real me cannot be seen.  I am hidden under a cloud preventing others from seeing me and what I have that is good.

The one place I feel freedom is in worship.  Music lets me be myself…all broken, but with no limits. I love to worship.  But even in worship, especially in worship, I feel things rise up in me.  I hear songs, and I see what could be.  Good worship gives me no desire to be leading it…but I do have a desire to come along side and help others to develop and grow.  I have something to impart to others and I would love to help them move out in worship and songs.  I don’t want to be the one leading on the stage, I want to be the one supporting the one on the stage, and helping them find their gifts and move in them in order to draw people into the presence of God.  There are songs in me, but they can’t come out without others, and there are songs in them that cannot come out if they are alone.  It is a corporate thing. You have to feed the spirit, but all the other stuff in life sucks it out of me and leaves me feeling the desire, but hopeless to accomplish it.

 

The Brick Wall

brick wall

This is another in a series of guest blogs from my husband about what it is like to live with a Traumatic Brain Injury. (TBI)  I saw the sentence in bold written on a notepad.  I asked him to tell me more about it and this is what he said to me.  

The Brick Wall

As told by Bill Gunnin

“Often there are days I wake up and feel like I am standing in front of a very tall brick wall that extends across the horizon, and there is no way to scale it.” –Bill 

For some reason, it was a familiar feeling to think of this image.  I had an inspiration-ah-ha kind of moment where I was thinking about things more than normal.  I guess part of what brought clarity was I knew there was something I needed to do that day.  The pile of issues, job, ticket, money, getting with people about jobs, my dad, all the stuff going on right now in our lives, etc.… I had an overload moment.  I hit a wall.  Suddenly, I had this image of a long brick wall in my mind and the picture was so clear to me.  I have a wall in front of me, always.  In stressful situations it gets even worse, or seems bigger. I have to go somewhere, but I don’t know how.  I have a loss of confidence. The picture was clear of the wall, but other than that, I had no understanding of what it meant exactly.  It was broad general feelings.

There is nothing specific that made me feel this way I don’t think.  It is helplessness.  There is a sense I can’t go anywhere, because there’s nowhere to go to.  It’s an obstacle I can’t do anything about, and there is no way around it.  It doesn’t even occur to me there might be another path.  There is anger and frustration because there is nothing I can do about it. Put yourself in a situation where there is nothing you can do. You are helpless to help yourself.   Like in the movie we watched, where the pilot went down in the ocean but couldn’t get out of the plane.  It was over…there was nothing he could do. He kept trying, but there was no option for him, the only thing that could help him was something outside of himself.  He was powerless to his circumstances through no fault of his own.  For me, it translates to I can’t think.  I can’t develop a plan. There are no options for me.  I get angry and frustrated at myself.  The ideal me says, “How stupid, you have options. You are so stupid! Just do something!”  But then I don’t, I can’t. I get mad at myself, and hate it.  The wall is such that it doesn’t occur to me to climb it or go around it.  It is insurmountable.  That’s a very bad feeling.  It feels impossible.

Often when you talk about emotional things…the challenge, is in getting specific. It is hard.  Emotions are layered and general.  The emotions I am conscious of in the moment, are often not the root of the issue I am feeling.  They are a blurry thing.  Brain scientists say that emotions hinder higher level functions like logic, and analytical thinking.  When I am picking things apart or self-debriefing, becoming self-aware…such a hard thing for me, it is something I have had to work on over and over again…clear concrete facts are hard because the feelings that go with them are tricky.  Coming to conclusions about my feelings is hard to do without assistance.

Sitting at the table that morning, I wrote the sentence down about the wall.  It was the first time I recognized the feelings I have all the time, as something descriptive.  I’m having emotions and I cannot communicate them, but that image is worth 1000 words to me. It communicates them all.  It expresses the feelings I am unable to say with words.

It’s was a step.  I was just feeling frustrated, because our circumstances cannot remain the way they are.  I can’t just sit here.  I was thinking about letting you down, letting my family down.  How embarrassed I am.  How humiliating it is as to what my image of a man is…always working on things, finishing things, drive to succeed.  I should have that drive…and I do…but I can’t. I do want to, but sitting there that day in the kitchen, I couldn’t bring myself to make calls or do anything.  I am disgusted with myself.  If any of my children or people I know saw me like that…I would be so embarrassed.  I feel like everyone is going to find out the truth that I am a lazy butt.  What is my damn problem?

I hear everyone is self-critical sometimes.  I know that the thoughts I have go against what I believe.  I am loved by God.  I am forgiven.  I am a son, not a slave, etc…  But at the same time, I cannot be irresponsible.  I’m hurting, frustrated, anxious and then I think ‘How dare I even be this way?’ and yet I was submitting to it.  I cannot do what I want to do. Like that scripture says.  I guess maybe seeing that wall, extending across the horizon gave a visual to all the feelings I was having that day and all the other days.  We all interpret things according to our own background so, your wall and mine are different.  I finally saw it and it put a picture to how I feel.  It is not uncommon for me to have this bad self-talk,  and inability to process steps I need to take, it happens a lot.  I am conflicted internally most of the time.  In some ways when I saw that picture it relieved some of that pressure. Like a pressure valve released.  This wall is not something I contributed to and it is outside myself…but it is still there and an obstacle. I have to admit that I haven’t realized this, until this minute, as we are talking.   That picture of the wall took some pressure off.  I only wish I could remember the relief and hold onto it, because tomorrow it will start all over again.

A Word About Vulnerability

love

A word about vulnerability.  This word has been popping up in my comment threads recently as I have written about the hard place we are currently walking. (Thanks for the comments, btw.  It is nice to know people are reading and my words are not floating into a black hole somewhere. 🙂  )  Because of the frequency of the word showing itself, I decided to study its origins. The word vulnerable comes from the Latin root vulnerare which means “to wound.” Ability is simply defined as the “means to do something.”

Vulnerability = giving someone the means to wound you.

 Yikes, is it any wonder we avoid being vulnerable? It doesn’t sound too fun, and I can tell you from personal experience it isn’t, but it is necessary. Being seen, truly seen, is scary.  It is opening up the places inside yourself that even you avoid.  So much of what we do as humans is avoidance of letting others in.  There is fear we will not be loved or accepted.  There is shame that somehow, we don’t meet up.  Fear and shame partner together and feed our fears of rejection.  Our deepest need is to belong and be loved despite our shortcomings, and it seems life conspires against us in sharing that need. We keep hidden.  Our deepest fears thrive in the shadows.  Darkness conceals our shame, even to ourselves.  We self-protect in so many ways, using defenses to reduce the dissonance between who we are on the outside to the world and who we perceive ourselves to be on the inside. Hiding from ourselves and others reduces anxiety from the possibility of being wounded, but it does not assist us in meeting the deepest need for acceptance.  So, we wander around in life longing for acceptance, but at the same time pushing away the very thing that will bring us that connection.

Vulnerability.

Instead we opt for defense mechanisms like projection (blaming others), repression (denying our pain), regression (acting childlike), compartmentalization (pushing negative parts away), rationalization (defending our behavior), intellectualization (hiding behind logic), or any other number of defenses.  We are unaware that we are doing these things because they are deeply embedded in our subconscious, but they are the basis for much of our behavior and reactions to stressful situations. I have used all of these and more, and not in healthy ways either.

The one I use most is spiritualization (using spiritual things to deny reality).  I’m not sure that one is recognized in books or not, but I know how it works.  I hide behind the truth.  When something bad happens I say, ‘God is good all the time,’ even when I don’t think it’s true. Or I say ‘God always finishes what he starts,’ when I don’t see the end in sight.  Or ‘God is faithful,’ when it seems he is anything but.  My life verse says, “I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.” I hide behind it every time something harmful happens to me.

I can feel you squirming as you read, but bear with me.  There is a difference between hiding behind the truth and holding onto it.  One is a defense mechanism, the other is being authentic.  One is a cover up, the other is simple faith.  Holding onto truth trusts that if I am honest and admit my doubts and fears, God is big enough to handle it. Here’s the thing, If I am not vulnerable with God, who can I be vulnerable with?  I have realized that I am using the shield of faith to protect myself from God.  I don’t let him past my scriptures and clichés, and if I don’t, he will not have the opportunity to heal my broken heart. I have to put down my shield, because in the intimate spaces with him I don’t need armor.  Armor is for battle against my enemy, not for the secret place with the lover of my soul.

I have to be vulnerable. I have to say, ‘I don’t get it. I don’t feel it.  I don’t believe you are for me right now.  Help my unbelief.’  I have to be real with my tears, and my confusion.  Sometimes I am not even sure he is safe and that’s about as honest as it gets.  However, I am willing to hold onto what I know in my head is true, even as I whisper to him what is in my heart. I have to be willing to let him show me himself, instead of projecting what I want him to be. Sharing deep things with God is risky, but here’s the rub, what if don’t share?  What if sharing the deep things, being my authentic real self, is the way to healing?

If that is true, then vulnerability is the path with God and with others.  Opening myself up and saying ‘I am not okay’ instead of ‘I am fine,’ is a huge step, but it makes people uncomfortable.  Sharing the dark places is not smiled upon in our culture.  We are expected to stand strong, push through, trust God, and have faith during our trials.  Vulnerability requires me to let go of those façades and be real.  Real is scary because of the possibility that rejection will follow.  The probability is high it will.  It is the risk of opening up and honestly saying what you feel when you are confused.  It is something that cannot be fixed with a few words from the Bible or an inspirational meme.  It requires time to find the courage to put down my armor in the presence of God and let him see me…the real me, unprotected and scared.

As I put these things down, and refuse to pretend all is well, I am finding some freedom.  A burden is lifted. I am not quite to hopeful yet, but there might be a spark beginning to glow.  As we revisit brain injury and look at how it affects us now, we are feeling relief of being known.  Each tiny step we take is beginning to crack the armor we have been carrying for years.  We are not hiding anymore.  Not from God.  Not from people.  We are finding the path of vulnerability to be narrow and overgrown, like walking through the jungle with a machete. Some days it is too thick to make much progress.  Others it seems to open up in front of us and invites us forward.  There is quicksand that bogs us down, and there are clear paths which seem straight, until they’re not.  We are walking through a journey and a process which, we are sharing as we go, in hopes of finding connection and belonging in the deep places… of vulnerability.

 

 

 

 

 

 

 

Guest Blog

17191794_10211972892381522_696044197707358754_oToday I have an important guest blogger, my husband Bill.  He has a story to tell that is important.  In fact, it is one of the things that has been swept under the rug at our house for years, as we have been in survival mode. It is where so much of our lives together have been formed. In this current season of unraveling and looking back to go forward, we have started to dissect some things from the past. We have decided not to suffer in silence any longer.  I cannot tell you how proud I am of this man, and how much love I have for him.  He is amazing and I thought it appropriate to share this first part of his perspective of how brain injury affects him, on our 31st anniversary.  This is taken from conversations we have had together while hiking, or sitting over coffee, or driving in the car.  It is the tip of the iceberg. We are thinking of compiling our experiences for a book, at some point in the future.  It is kind of random and raw at this point while we are processing.  He shares and I write it down for him so he can concentrate on expressing his experiences.  I can tell you this, marriage with a TBI has been a hard road, still is, but I have a heart bond with this man.  Most couples do not survive TBI, we understand why, but we also are deeply committed to be one of the couples who does.  If I had known 31 years ago on our wedding day, what was in store in a year’s time, I still would have married this man I love.  Happy Anniversary!  

 My Hidden Permanent Disability

as told by Bill Gunnin

How do you overcome a disability you cannot see? I wonder how many of my perceived character flaws are really a symptom of my TBI?  It’s been so long ago, but they say TBI is forever. What if my character is not flawed as I think it is, but my TBI has redefined my life? It is like a living nightmare to be unable to do things, but to have no idea why I cannot do them.  An invisible force prevents me, and it is as if I am boxing an unseen enemy who I cannot identify, and I cannot defeat.  It has the advantage over me because not only is it hidden to others, who only see outward appearances, it is imperceptible to me, from inside myself.

There is a long list of symptoms and I have many of them, but I don’t always know. I have to have someone else tell me. There used to be more, but these are the ones I still have trouble with sometimes:  Impulse control, memory, ability to attend, focus, brain hyperarousal, agitation, irritability, egocentrism, denial, selective obsession, depression, lack of motivation, social immaturity, social dependency, inability to make decisions, logorrhea (excessive talking), panic, anxiety, frustration, mental fatigue, impatience, being hypercritical, hopelessness, decrease of social interactions, disinhibition (loss of filter), intolerance, inflexibility, setting priorities, word retrieval, and decision making.

It’s embarrassing.  People think I am one way because they cannot see the injury.  I want to be the person they think I am, instead of who I actually am.  I am embarrassed of myself, within myself. When I talk about my deficits and a possible job, I think ‘who would want to hire someone who has all these deficits.’  I don’t want to talk about it.  I know I can do the job, at least I think I can, so why talk about possible limitations? But I may not be able to do what I think I can do.  I don’t know if I can or not, so should I say something and risk not getting the job at all?  It’s discouraging and depressing.  I have trouble making decisions.  I can’t direct myself to what needs to be done now and what needs to be done later, because of that sometimes I can’t do anything.

I’ve been told of deficits and I’ve read about them.  I am more aware of the ones that affect me, after they happen than when they are happening, any recognition I have about myself is all in retrospect. Just now, I realized something, but then I went to get paper to write it down and forgot it. I want to just be me, but I feel I am not acceptable as I am.

Impulse control. Delayed gratification. I cannot delay wanting something.  If I want a milkshake, I go get it.  In the early days after the accident, this happened in outbursts of anger or other feelings. I could not control my temper, or my tears.  I felt things and they just came out.  You don’t realize how much your brain helps you to be socially acceptable with your feelings by allowing you to hold them in or let them out appropriately.  It is not as much controlling emotions now for me, only when I am tired or overwhelmed, but I can hold them back better.  For me, it is more external things for comfort that I cannot seem to stop.  I guess it is what some people would call will power.  I lack that in some areas. For example, impulse control in conversation…I can’t hold back my thoughts, so I interrupt constantly, and even go in different directions in the conversation. I don’t know it though, not at the time. It requires review after the fact for me to see it. It frustrates my family, or people I am talking to for me to do it, but because I don’t say everything that comes into my head (believe it or not) I think I am doing well.  I don’t always see the frustration on someone’s face or pick up on social cues, so I just keep talking.  My kids will tell me, or my wife will nudge me under the table, but I don’t see it myself really.  So I think I have more control than I do.  Like right now, the music that is playing is bothering me while we are talking. I don’t want to hear a song where I recognize the melody, because it pulls my attention away from trying to talk about this with you. I just jumped off topic because of my external environment and my inability to filter it out. If I am in a loud place, like a crowded restaurant it is overwhelming to me. I will stop talking because I cannot keep up with all the stuff going on in there and carry on a conversation too.  It also tires me out, so when I leave there I need to go rest so my brain can calm down again.

Memories are a tricky thing. I don’t trust that I am remembering it correctly.  When I try to analyze things I can’t, especially under stress.  I get agitated when I have to deal with external stressors.  A lot of regret about not handling things well…after the fact. Or not being able to remember things that I know I should know.

Symptoms are sporadic and sometimes I can do things…other times I cannot.  I hate these problems.  They have no solutions.  It’s not clear cut…like needing hearing aids, or my knee is hurt, so I cannot walk. Those are direct and easy to understand at least. For me, sometimes I know the issues, and sometimes I can’t see them.  So much of it depends on external circumstances that are beyond my control, and it prevents me from showing what I can do.  For example, I had a job interview recently.  I was in the lobby filling out some short answer type questions where I had to write.  There was a baby in the room and there was some confusion as to who was keeping the baby between the two adults there, so one of them could leave. I couldn’t concentrate on what I was writing because of the distraction, but also because I was worried about the baby and the situation even long after they had solved the issue. It’s like it got stuck in my brain. They came and got me for my interview but my questions were not finished, which made me feel like I did something wrong. Employers don’t have any idea what it means to me to say, you can finish it later.  I went from the lobby, and my unfinished questions with my feelings of being inadequate, directly into a room with a panel of people asking me about how I would handle made up scenarios.  I thought the interview went great, but now looking back at it I can see I totally messed it up and my answers were not good because I could not think clearly. I talked too much, because I do that when I am stressed. When I interview they probably think I can’t handle stress.  They think about how those little things, like a baby in a room while writing affects them, not me.  I can handle a job, but I never get the chance to show it.

This transfers to other areas, it is easy for me to be critical of other people, but impossible for me to understand what pain they have from their own experiences.  People who are discriminated against for color, or religion, no one truly knows what they have been through in their lives.  I have the same type issue with my hidden disability…no one knows.  It’s invisible. Saying you understand is different than my gut level experiences with rejection.

I have compassion for people who are having trouble, like the elderly, or disabled people. My limitations have taught me patience and given me empathy. I like for the elderly to feel their own autonomy in the small things, like which trash bags they want or other things when they are shopping.  I could just pick some things, but I want them to feel they have some control over their lives still. Sometimes they are like children with an intellect.  I understand how that feels. I can guide while still letting people feel they are in control. I want to be someone who comes from where they are.  No assumptions on my part, instead I want to show empathy.  If they are angry and cranky, they don’t have evil intent, they are just frustrated.  Cranky old people are misunderstood, the problem is they are losing themselves and it makes them unhappy. I get that.  I say let them be who they are.  Interesting people.  I want someone to let me be who I am, too.   Nothing I can do can change what older people think or feel, and just because they are old, people nod and smile and understand them, give them patience.  I want people to give me that same kind of understanding.

The New Normal

humility“You will find a new normal.”  I have heard the phrase many times, and in fact, I have said it to others in trying circumstances. The new normal seems like a goal, a hidden place where all things line up once again.  However, what no one talks about is the strong longing for the old normal…before.  Before my arms ached for a baby who was alive.  Before my husband changed to a different person.  Before the scars from cancer marred my body. We all have our befores. Before death. Before disease. Before dysfunction. They are right, you do adapt to the new normal and learn to cope with losses.  With each loss, I learn to deal with a different reality than I previously had to consider.  But that doesn’t stop me from grieving the old normal.  I know people who have endured unimaginable losses.  Many of them have sent me notes as my last two raw blogs were published.  Some are dealing with diseases and the limitations they bring.  Some have lost children and have gaping holes in their hearts the size of the Grand Canyon.  Some have walked through divorce and are facing single parenthood, alone and scared.  Some have lost friendships that have ruptured their souls.  Others have loved ones who have died, or children who have turned their backs. Dysfunction has claimed families to the point there is no reconciliation.  Abusive behavior of a spouse, a sibling, or a parent has caused self-doubt and condemnation to rise up. And still, people say, “You will get used to the new normal.”

I want to spit on that phrase because it denies the truth of the loss.  It says, ‘just get used to it’ or the other common phrase ‘just get over it,’ as if it is ME who is the problem, not the circumstance.  The root of the finding the new normal is acceptance of whatever the loss is.  I have never been one to blindly accept things until have understanding, until I work through what a monumental loss means to me.  I used to ask why, but I long ago realized that is the wrong question, because it leads nowhere and has no answer.  It leads me around in circles, taunting me in my attempts to sleep and it puts all the reasons for calamity firmly in my court.  I didn’t DO something right.  If I had been better this horrible thing wouldn’t have happened to me.

Instead of why, a better question is what now?  What do I do now that my life is no longer normal?   I am an optimist…or I try to be.  I look for the silver lining because there always is one.  But sometimes I wonder in trying to look on the bright side all the time if I sweep too much under the rug.  In my effort to avoid being a victim of my circumstances, have I pushed the perceived pain away, or I have I simply denied it exists? The problem with burying the hard stuff is that it doesn’t really go away.  You end up, in a place like I am in now, where the rug is mountainous thus preventing movement. It is time to pull it back and examine the pieces I have swept under there so I can be truly rid of them rather than just pretending they aren’t there.

It is times like these where I can relate to the Children of Israel in the desert.  Going in circles is tiring.  It brings out the worst attitudes.  We look at the provision of God for them and think, ‘How could they not see God’s hand protecting and providing for them?  How could they complain against him in the midst of the miracle of manna? What whiners they were!’  Now I am the one in the desert who cannot see the promised land.  Now, I get it.  How long will I wander?  How long will the promises be withheld from me?  I gather manna daily.  I have for nearly 30 years.  I watch the cloud, the hand of God, cover me and I see the pillar of fire light my steps. I depend on him for everything because I have no other choice.  I worship him in the desert, but I also do not understand why I must stay here.  If I were Moses I would have beat the rock to death out of frustration.  I can so relate to why he didn’t do what God told him to do. I am sure it felt good to hit that stone, and once he got started he just couldn’t help himself.  Meanwhile, the cynicism of the people grew to the point that once they got to the land, the giants loomed larger than God. The daily hardships overshadowed the promise.

Hope deferred makes the heart sick, it also clouds the eyes.  Hope becomes an enemy who never keeps a promise. The other shoe always drops, and the light just goes out internally as a means of self-protection. It hurts too badly to hope for a different normal.  The longing for milk and honey is overwhelming.  The loss of dreams never to be fulfilled is painful.  The dichotomy of those two is unbearable.  Instead, I find a “new normal” which denies my hurting heart expression.  I adapt.  I cope.  All while the mess under the rug gets bigger and bigger, until one day I am trapped in a room with a mountain that blocks my way out.  A day like today.  A day when life has to take a backseat to healing and where wholeness becomes a priority above all else.  A day when I decide to go retrieve hope from the old normal and bring it into the new.

Explanation

michelle-in-front-of-yonahI probably never should have pushed the publish button at 3:00 a.m. I do not usually share these kinds of deep places…until after the fact.  My usual pattern is to pull away and sit in silence, waiting for the sun to come up and the lesson to make itself known.   But this time, I know that isolating myself is not healthy.  Hence, my lament last week went public. Don’t you hate it when people put vague but heart wrenching stuff out there, but never explain it?  I do.  It caused quite a stir and I learned two things from it.

  1. I have a multitude of people who love me. I did not intend to scare anyone with my post. (Bill called it my suicide note…I promise it was NOT.) I rarely publish the hard places publicly because of this very thing.  However, the calls and notes I received have brought a measure of healing along with the acknowledgement there are people I can call when I am in a painful place.
  2. There are many, many people who are hurting. Along with exposing my pain, I unknowingly exposed the pain of others who have/are walking in difficult places. They reached out with compassion, not trying to fix it for me, but just holding space to allow me to feel.  Only those who have walked in brokenness can fully grasp what it means to have someone who gets it. Thank you.

Grief is an odd companion.  There are stages of denial, anger, bargaining, depression and acceptance.  I have found, in my life, that these stages are not linear, rather they jump around like frogs in a rainstorm.  Just when I think I have found acceptance, tears reappear.  Or when I know I am no longer in denial, I find another area that has been hiding in the corners of my heart.  Recently, a confluence of circumstances triggered some pain I thought was long ago dealt with.  I would have said I had full acceptance of this loss, but in reality, I was in denial.  Funny how that works.

It seems going back is my way forward these days.  Unresolved pain, from the TBI (Traumatic Brain Injury) days 29 years ago, is washing over me like the waves at the sea.  I walked the stormy beach last week in Fl. and watched waves crash over and over again like an aching metaphor of TBI life. The ancient pain festered and cried out reminders that there is still unfinished business of the heart back there which is effecting me, even now.  It is like an onion, that is peeled back one layer at a time until the core is all that is left, and like cutting an onion, the tears flow unchecked and uninvited.  Long past days of survival cry out to be heard from the depths where they have lived stuffed for years.  Loss unimaginable refuses to be relegated once again to the back burner, and so every event brings pain gushing forth to overflowing.  A movie rips the scab off of wounds currently tender.  A change in plans undoes me.  No one gets it.  I don’t even get it.  But I am in pieces, and all I know is that it is like beating my head against a wall over and over again. I want to curl up in the fetal position and cry for days.  All the prayers in the world cannot bring back what was lost to us on that day so many years ago.  All the cheerful-look-on-the-bright-side words cannot change what I am dealing with, even though I appreciate them and I wish they could.

Sarah Bessy, one of my favorite authors, put it this way,

“All of this has reminded me of how trauma sometimes sleeps in our souls, too. We can carry our trauma – whether it’s betrayal or hurt or abuse or loss or something else entirely – for a long time before it surfaces. Often it is when we feel we’re making progress that we discover reawakened old pain and then we have to deal with that now, too. I talk to a lot of people who have what we might call soul trauma. Sometimes they are so grateful to be alive that they feel it’s wrong to admit that they’re still hurt, that some days are harder than others, that they need help. They survived – the rest is details, right? But I’ve learned along with these brave souls that God is in the details.”

Soul trauma. It is a time for me to grieve the details.  A time to try to find the illusive acceptance which seems always just out of reach.  Somehow to let go of the shattered dreams, to stop trying to glue things together, and to recognize our lives are impaired. I cannot explain what it is like to see your barely recognizable husband tied to a hospital bed. I cannot describe days of bedside vigil praying that he would live only to wonder why I prayed that way, when he awakened as a strangely different person.  I cannot define the feeling of teaching him how to walk, eat, and dress himself again. No one can understand what it is like to live 30 years trying to regain your dreams, only to realize they are unattainable. The frustration, the heartache of watching the man you love, try so very hard to recover all that he lost, on one day, in one minute. Walking beside him for years and watching the struggle that is so very real every day. We have lived with the residual issues of a damaged frontal lobe from the day of the accident till now.  My charming, gregarious, fun-loving, hilarious husband is too wonderful for words, but he has some limitations.  TBI is a stealer of stability, and I hate it for that.  Jobs come and go, and because of the frequency of that fact, they are also hard for him to find.  There is no understanding of how many friends fall by the wayside, how many jobs slip through the fingers, how many attempts it takes to do the most basic things like making decisions, or remembering where you put your stuff.  Unless you have done so, you cannot know what it is like to live in a before and after world.

Nevertheless, there is a fierce love which does not give up.  It is deeply rooted in stubbornness and tenacity, and we have it…have always had it, through TBI, miscarriage, cancer, fire, illness/death of a parent, and surgeries.  Nothing bonds hearts together like shared trauma. Our relationship is like steel. But recently a straw broke my camel’s back and my brittle heart is fragile. The contrast between past and present is difficult to reconcile. I seem to have a foot in each. The NOW part of me struggles with a faltering faith that is shaken to the core. Going around the same jobless mountain, back in survival mode yet again. The PAST part of me knows that holding on to God is the only way through the tough stuff. The broken part of me sits down and cries, “Where are you God?”  The part who has walked through hellish times before knows he is never far.

I am like a child having a temper tantrum because I do not get what I want. The grief is in realizing I will not get it. Meanwhile, God waits quietly for me to cry myself out. All I know is that he might be waiting a while, because nearly 30 years of survival mode has pushed me to the brink. All the pent up, buried, painful grief I have silenced for years is demanding to be heard.  I have people who listen and guide me in these kind of times. My family has carried me so many times, we would not have survived without them. There are others who have walked along side us for years and know just what to say and how to pray.  I do not want it to sound as if I am not grateful for my life…I am.  I have been blessed beyond measure, I am just very tired.

Leap Year Memory

IMG_9672It’s a leap year and for some reason I hadn’t realized that until this week. When I did I had a flashback moment to leap year 1988. Not sure why that happened, but my memory jumped back in time to when Bill was in the hospital during a leap year. It was also an Olympic year and the closing ceremony was one day before the 29th. Maybe that is why I remember it so clearly, like it was yesterday.

I thought the Olympics would help bring a breakthrough for Bill’s injured brain. We had always loved watching all the winter events, probably because we were big snow skiers. In fact we had returned from a ski trip to Colorado one week before his accident. Our love of The Games was the thrill of the competition, the anticipation of each event…we were in awe of the spectacle of it all. To this day, we still love the Olympics, but all those years ago I had hopes of my husband sitting down to watch and remembering. I just wanted him to remember something. Anything. I just knew the Olympics would be the trigger to his memory of our lives together. I was wrong.

tomba  jamacian bobsled

Instead, he could barely sit in the day room of the hospital inpatient rehab unit where he was living. Each night I would try again. We would sit in front of the television screen with all the other head injury patients. (That was quite an audience let me tell you!)   By the 3rd night most had given up even trying to watch, but not me. I was determined to bring back some memories, plus I wanted to watch…even if he didn’t…I was interested in the competition…that, in addition to the fact that the games were being held in Calgary Canada. Our honeymoon was to the Canadian Rockies and Alaska. We had daydreamed of going back to Canada for the Olympics as a kind of anniversary trip. We knew we would never be able to afford it, but it was the stuff newlywed dreams are made of. I couldn’t help but think that something on that screen would take him back to our time in that beautiful country together.

brians         dan jansen

Instead, he paced. Each time I would get him to sit down he would last about 3 minutes before he started circling the room. And then he wanted to go into the hallway to walk our regular circuit, which we did several times each night. By this time in his recovery he was out of the wheelchair most of the time. He had the infamous “rehab” belt around his waist and when he was up I was required to be by his side and holding onto the belt in order to steady him lest he fall. We certainly didn’t want him to hit his head again! The only thing was, he HATED the belt. Didn’t want to wear it and didn’t want me to acknowledge its presence. Rage and tantrums were in abundant supply anytime I tried to hold onto the belt the proper way. Therefore, when he was walking I was doubly sure to be close enough I could grab it just in case he went down. I was stuck like glue to his side at all times, and constantly watching his every uneasy, unbalanced step to determine if I needed to quickly grab a hold. It was like having an angry toddler and my dreams of sitting together on the couch watching our favorite sports faded into wishful thinking.

katarina

After day one, I realized that I wouldn’t get to watch the Olympics uninterrupted unless I recorded them on the VCR at home. My days consisted of going to work and waiting tables, then going from there to the hospital to walk my husband until he went to bed. After tucking him in, I left and went home to an empty house, fitful sleep, and bad dreams.

During the Olympics of that year, I went home curled up on the couch and watched the recordings of the events from each night. I can tell you it isn’t nearly as much fun to watch by yourself. Those Olympics were some of the most memorable…The Battle of the Brians, Alberto Tomba, the Jamaican bobsled team, Dan Jansen, Katarina Witt, and Eddie the Eagle. (Ah ha moment…in the deep recesses of my mind I think the opening of the movie Eddie the Eagle in a leap year may have triggered this whole walk down memory lane.)

eddie eagle

Each night, I changed out of my work clothes into my sweats. I fell onto the couch, wrapped up in a quilt, and hit the play button. I allowed the Olympics to carry me away. It was an escape of my reality for a few hours each night. Yet even in my pretending that all things were normal, my eyes knew the untruth of this nightly farce…and each night they filled the couch pillow with tears of grief of all I had lost as I watched alone. Several mornings I awoke to find myself still on the couch in front of the static filled TV screen, with swollen eyes, and mussed up hair…wishing the leap year, the year of the extra day, would somehow leap over me and bring my life back.

TBI

IMG_9672

Feb. 2, 2016

Dearest TBI Loved Ones,

I sit here tonight and think back to 28 years ago. I was crying myself to sleep after sitting all day in the ER and ICU with my husband Bill following a car accident. I had no idea how my life had just changed. I had no idea what was ahead and how very difficult it would be. I only knew that my true love was in danger of dying, and I could not rest because of that fact. I wonder now, looking back, how in the world I survived that time. I wonder how it is that I sit here 28 years later; still married to this man I fell in love with all those years ago.

I can tell you that the heartache continues on long after the injury has “healed” and that all the stages along the way are stepping stones of hope that things will get better. A hope that never seems to pan out. I know the pain of verbal assault, and the feeling that somehow I am always to blame for everything. I understand the feeling that I carry the whole load on my own. I am aware that mental fatigue is a reason for just about everything that doesn’t get done. I know what the death of our dreams feels like, and I know the grief of letting them go. I understand the longing for things to be “normal” or to go back to the way things used to be, while realizing that that just isn’t possible. We are not who we were, and we never will be. And while this all sounds rather hopeless, I know that it isn’t. Not really.

My husband came back so much farther than any doctor ever predicted. Was it a long road? Yes…very long. Is he who he was before? No…he is not. But then neither am I. We are new people and we have a new life. I found that the sooner I let go of our old life the better things were. Before that, I found resentment a constant companion, and bitterness a willing mistress.

I dropped the physiatrist who gave me the statistics for marriages after TBI. I didn’t want to hear that 100%-divorce-rate negativity. You see I was 23 and quite stubborn…or maybe naïve…or idealistic…not sure which. My plan was to fix it all. I figured if I just tried hard enough everything would work out…happily ever after and all that. You know, just as I do, that “everything working out” isn’t how it goes in TBI land. Yet, I had the ability to hold on and endure the beginning stages of being married to a 5 year old with a temper. Then to re-teach him skills so he could work when he made it to adolescence. He learned some coping strategies that allowed him to adjust in social situations. Eventually he made it back to adulthood and the working world, though there has been a lot of job hopping. He leaned on me for everything. Truly. It was beyond exhausting. Add four kids into the mix and it made for some very interesting times.

I wish I could tell you what made the difference for us so that you could find this place of peace for your own journey. I can’t. Every story is so very different. Every painful ripping of the heart is its own unique wound. Each family has to deal with a myriad of issues some due to the injury, some due to family relationships, some due to pre-accident patterns. What I can tell you is that you are worthy of health…mental and physical. That you are in need of care too. (Caregivers are usually the last to get care because we make everyone else a priority.) That you are incredibly strong…stronger than you know. That you are doing the best you can…and that is enough. That you cannot carry the world on your shoulders…you have to have help. That you are not invisible. You are not incompetent. You are not alone. There are many of us out here.

I wish I could say that faith in God will get you through, but I don’t know if that is true for you. I can tell you that it was a lifesaver for me. When I was in the deepest darkest places, God carried me. When I was overwhelmed, he was my peace. When I was carrying the weight of life, he lifted it for me. Looking back, as I do every year on this day, I can see the starts and stops, the beginnings and endings that got us to where we are today. I believe Jesus played a huge role in all of that for us. Yet, I know others who have diligently prayed and whose circumstances haven’t changed. I know many who lost their loved ones to death or permanent disability. I do not dare to presume that I have something over any one of them. Each of us has our own walk, with our own decisions to make. Hard decisions. Decisions that no one can make for you, and no one can understand if they are not in your shoes.

On this 28th anniversary I just want to acknowledge that TBI doesn’t have to kill you. It doesn’t have to destroy everything good in your life. I am proof. There is hope that a life that is beautiful can be built from the ashes. Over time, with lots of self care, outside help from a support system, and working together to make things better it can be done. The residual symptoms can fade…not away…but into the background. The new life can be a sweet and beautiful thing.

Sincerely,

Michelle

Memorial Stones

IMG_9815It is cold. It is raining. It is Feb. 2nd. I think most years Bill’s Alive Day comes and I do more celebrating than remembering. But the weather was a factor in his accident 27 years ago. The rain was coming down in sheets like it is now, at least as I write this around midnight. They cut his clothes off because he was caught in the van, because he was bloody, but also because he was soaked through. I drove to the hospital with the windshield wipers beating out the same rhythm as my heart. The paper bag they gave me with his clothing was soggy on the bottom from the bloody, wet shreds of fabric contained within. And one shoe. I thought it odd in my foggy haze that there was only one shoe. And why did they save clothes that were in pieces? Did they think I would sew them back together? And if I did, did they think I could get the blood that turned them nearly solid crimson out? The wallet and wedding ring were handed to me…separate from the clothing. The ring went on my finger behind my own and there it stayed for months. Until the day he came home to stay.

IMG_6957Now I think back on those days…the days of his story, now that mine has been told. His story is one of miracles, and the desire to come back to me. To come home. To do what was needed to become functional. To continue his recovery, walking, talking, then on to working, and being a dad. Not all TBI sufferers come back as far. Truth be told, not many do. To me that is the miracle part of Bill’s story. The things that doctors said were impossible that he does. The things that shouldn’t have happened that did.   His testimony is one of the faithfulness of God. We stand amazed when we look back at what could have been. And each year we stack our stones of remembrance and thankfulness. We add to the altar of memorial so that we do not forget the miracle that is. When my children ask me ‘What do these stones mean?’ I can say they are a testimony of God’s faithfulness to us. A witness of a time when God parted the sea with his presence, delivered us and rescued us. We live today, in the moment…in celebration of the 27th anniversary of Bill’s Alive Day.

Ta-da! The End

This blog is the FINAL INSTALLMENT in a series I am writing about my husband’s brain injury.  I have made it to the end…for now at least! Thank you for your interest and constant encouragement as I wrote my story. If you wish to read the whole story in order, go back in my archives and find Begin at the Beginning…all the ones in the category brain injury tell my story. Thanks again for taking the time to read and being patient as I walked through the one of the toughest parts of my life again with new eyes to see how God used the broken pieces to create something beautiful.

IMG_9705I have told my story…at least the parts of it up until this point. It has been difficult, but at the same time quite healing to my heart.   Somehow putting it on paper has brought it from the shadows and into my awareness in a way that has bathed me in God’s grace…to see…to sit in awe at what I survived and how his hand carried me at every step and stage. Amazing is too small a word to use. His faithfulness to me is overwhelming. I am forever indebted to him for rescuing me and for becoming my everything. I did learn quite a few lessons along the way that I wanted to share with you as I close this series.

  • Never ask “what is his condition” when a nurse calls you with news. If she called, your loved one cannot speak. No need to force them to tell you that before you are ready to hear it.
  • You are never alone. NEVER. Even when it feels like you are.
  • Friends and family want to help you. Let them.
  • When crying yourself to sleep at night, let God be your comforter.
  • Sometimes tears are prayers…no words needed.
  • He is close to the brokenhearted. Really.
  • You are stronger than you think…because you are brokenhearted.
  • Funny how that works.
  • Days and days in the hospital run together. Get out and get some fresh air sometimes.
  • Laugh whenever possible…even if your husband is crazy.
  • Because your husband is crazy.
  • Remember the stories of him throwing food at you, pulling out his IV and packing, getting names wrong and saying he won the Super Bowl will be funny someday.
  • Let him count backward from 60 as fast as he can, as many times as he needs to.
  • Get earplugs so you don’t have to hear it.
  • God sends angels in human form just when you think you will die.
  • Let them minister to your heart.
  • It is a blessing.
  • Write a prayer journal about your own journey.
  • Write down everything. Every. Thing.
  • It might make a book someday. 😉
  • Listen to God’s heart for you.
  • He speaks it in many ways.
  • Believe what he says.
  • Hide in the palm of his hand when needed.
  • He can be your husband.
  • Trust him.
  • Do not listen to the words of others that are thrown at you.
  • Do not take it personal when people pull away from you.
  • They do not know how to be in the moment for you.
  • They have not walked that road…yet.
  • They don’t get it.
  • Not their fault.
  • Not yours either.
  • Give grace.
  • Do not allow abusive behavior. No matter what.
  • Seek help.
  • I’m not kidding.
  • Keep yourself and your kids safe.
  • Hold tight to the hand of God.
  • Do not let hope flicker out.
  • Process at your own rate.
  • Even if it takes 28 years.
  • Demonstrate love.
  • Demonstrate grace.
  • To others…and to yourself.
  • Allow your pain to soften your heart not harden it.
  • It can destroy you if you don’t let it do its work.
  • Let it.
  • When you are shattered, know that when the pieces come back together it will be a beautiful thing.
  • You are beautiful.
  • No.
  • Matter.
  • What.
  • Never forget that.
  • The End. 🙂