February 2nd, 30 Years Ago (Guest Blog)

As told to me by Bill Gunnin

love

This thirty year mark is a significant day. It is a monument that marks a day of before and after in your life.  A day of reckoning so to speak. For you, it is a day of monumental shift where everything changed. For me, it is not that way at all.  I don’t have a before.  I only have an after.  I don’t remember what I was like before.  I am told I am different now than I was then and that’s all I know.  For me, I don’t feel different, it is just a continuum of my life.

It grieves me you had this horrific time in your life because of me, and I can’t relate emotionally.  I can’t help you with it, or heal it for you, or work through it at all, because I don’t remember any of it. You tell me the things I did, and I am horrified in my mind, but I don’t feel it.  I can help intellectually, but emotionally I can’t connect at all to your pain.  I can say I am sorry and it could help some, but I have no connection to the feeling of it.  I say I am sorry, because it is what you do when you know you have hurt someone.  For me it is just head knowledge of what happened, but for you, it is great emotional pain which I have no part of.  It is a big day for you each year to mark the day your life turned upside down…our lives turned upside down. For me it is just another day.  I am grateful to be alive, and I know that is why we celebrate this day, but I don’t even know how to talk about this day.  I am flummoxed.  It’s a day that changed everything, and I don’t remember any of it…so what the hell am I supposed to say about it?

Thirty years later.  I should have done more with my life in thirty years. I have no patience because I am ADHD to the hilt.  Yet, I can sit and tune a piano for hours.  I can do tedious things sometimes, but others I can’t sit still. My TBI makes me a dichotomy, unstable and unable to be consistent, which is a big problem in my life.  It holds me back, and I can’t do anything to help it.  Heaven knows I have tried, and you have tried to help me.  It feels quite a mess, like I am lost and cannot find my way. Mostly it feels like failure.  In thirty years, I should have been in a different place, but I’m not…we’re not, and that feels bad in the deep places.

As far as memories go, you ask what I remember of that day and I have snippets.  Nothing chronological at all.  Just like still photos in my head that don’t seem to go together.  They are foggy.  I am not sure if some of them are real, or if because you have told me the stories I have a “false” memory.  I remember having breakfast that morning at IHop in Roswell with a family from the church. I have trouble pinning past memories to specific days.  I remember breakfast, I know that I did that on the morning the accident happened…I’ve been told I did. I remember getting a notebook from them. I met with them more than once, so it can get a little blurry which meeting I remember.

I can’t do chronological.  I have bits and pieces, after the breakfast. Walking the halls.  Vague memory of a wheelchair.  The door in my room had a window in it. I had to wear a belt over my clothes.  I hated it, I remember not wanting people to see me wearing it because they would think I was a crazy patient.  I remember there was a dining room, and I had some job I got to do there, but I don’t remember what it was.  I remember people asking me the date.  I would go look at the calendar so I would know, but then not be able to remember. That was frustrating to me.  I have memories of them giving me lists of things to remember.  I remember physical therapy, but then it gets blurred because of the other rehab place I went to later on.  I remember people following me around. I thought they were stalkers. I didn’t know they were there to make sure I was safe.  I remember going home for day visits and having to go back to the hospital. I was nervous about it, really scared, but I didn’t want to go back to the hospital.  I wanted to be home.

This is a vague feeling…how do I describe this? I’ve never quite tried to communicate this or thought about this, I remember going home, but feeling like I am not sure if I belong here.  I felt lost.  What am I supposed to do now? I remember going into the house and feeling a sense of being unsure and afraid.  No schedule, no responsibility, no job.  I was so nervous.  I felt trepidation.  I feel it now, just talking about it.  Insecurity.  Not confident.  I thought I was supposed to know what to do, but I didn’t. It was a bad feeling. When I look back at that time it might have been the realization I was not who I used to be. Only I couldn’t verbalize it, I could only feel it, and not even really know what I was feeling.  Does that make sense?  It is a very uncomfortable feeling that I used to be one way and I am different now…I don’t remember what I was before.  I hate that.

I remember going to court to plead nolo contendere.  I was told to say that, so I did.  So, there was no penalty.  I didn’t think I did anything wrong, but I had the ticket for following too close, since I hit from the rear. I can’t remember what I was doing or anything about the day and the judge thought I was bad off since they had to check me out of the hospital to go to court. My dad had information from a private investigator he had hired to find out what happened.  I didn’t know that at the time.  I didn’t know someone pulled out in front of me, or that there were three cars totaled. I didn’t remember it was raining, or that the construction truck that pulled out in front of me had long lumber hanging out the back, which is what hit my head at 60 miles an hour. I didn’t know a bystander had removed my seatbelt to try to pull me out, in case the car was going to blow up, but no one would help him, and I was pinned inside until the jaws of life arrived. I didn’t know I was unconscious at the scene, but when I woke up it took 7 people to get me in the ambulance because of the fight or flight response. I don’t remember being handcuffed and tied down in order to control me and get me help.  I didn’t really know anything about any of it, only what I have been told later.  It sounds terrible and I am glad I don’t remember.  It is like I am talking about what happened to another person, not me.

I remember my friend Jim Moon coming.  That could be a false memory, because you have told me about his visit ,and how perfectly timed it was for you for him to be there on the day they moved me to the rehab unit.  I don’t remember anything before that, the ICU, or the surgical unit. I think I lost several weeks. I remember other people coming and going, but not anyone specific. Lots of visitors, but I can’t recall any of them. I remember a tape player in my room.  I don’t remember throwing it because I didn’t want to hear music. I didn’t know there were three different tape players because I kept breaking them, but you wouldn’t give up trying to play music for me.

I remember the boy next door with the thing through his head. I knew he was worse off than me since he couldn’t talk or move his head at all. His mom was nice to me.  I remember being across from the nurses’ station.  I didn’t know the window in my door was so they could watch me closely to make sure I wasn’t hurting myself or doing crazy things.  I remember walking past the babies in the nursery and looking at them.  They were cute.  I think there was a TV room and we tried to watch the Olympics. I didn’t know that I couldn’t sit still for more than 5 minutes and I paced and walked the halls to keep moving.  I remember I had some kind of job at meal time, but I didn’t know it was taking trays from the people in wheelchairs and putting them away.  I didn’t know they gave it to me to keep me busy since I couldn’t sit still.  I felt pride that I had responsibility.  I thought I was better off than the others. I remember talking to people and feeling I provided an important service.  Like a waiter.  I felt less damaged. I was helping people worse than me. I used my people skills…always trying to be charming.

I remember looking at my calendar to show them I was smart. I remember thinking they were over concerned that I knew what day it was.  So I would go look and then I still couldn’t give them the right date. I felt I was outsmarting them to go look at my calendar right before they asked me the questions.  Funny I knew they were going to ask, but I couldn’t get the answer right. So frustrating.

I remember the belt and having to wear it.  I wanted to hit my dad with it, because he was antagonizing me.  I felt mocked. He was trying to be funny by calling me cripple, but I didn’t think it was funny at all.  I got really mad at him. I don’t remember you stepping between us so I wouldn’t hit him, but I remember the feeling I was going to explode.

I do have a memory of riding in a wheel chair, before the belt. I didn’t know I made you walk me constantly at a specific speed…not too fast, not too slow…for hours and hours.  I didn’t know you all tag teamed to take turns walking me. I don’t remember learning to walk again. I do remember you taking me to the chiropractor to try to fix my shorter leg.  We went several times, before it finally shifted.  In my first memories after the accident, I was walking, so I guess I lost a few weeks. I remember one day I was looking for you and couldn’t wait for you to get there. I put on the sweatshirt you said I looked good in and waited. I was so happy to see you come around the corner that day. You have told me that is the day I was back…you could see the sparkle in my eyes again.  I only remember being happy to see you.

I also remember being excited about a necklace I got you for Valentine’s Day.  My dad gave it to me, but I really thought I picked it out.  I can’t remember what you got me.  I didn’t care about that, because I was so excited about giving you the necklace. I thought I gave you pearls, but you say that was for our wedding.  I get things mixed up sometimes.  It was opal with diamonds around it, now that I see it I remember it.  I don’t remember the stuffed dinosaurs with their necks twisted together that you bought me at the gift shop.  I also don’t remember telling you all about how I went shopping to pick out the necklace.  I guess I made that up since I didn’t know how I got it.

I remember playing an electronic poker game and making houses with playing cards. I don’t know how I had the focus for making those houses.  I don’t remember exploding when they would fall.  I remember pacing and walking in circles around the hospital. I remember being mad and hitting the windshield of the car and breaking it.  Did you ever doubt I would get back to stable consciousness?  What scared you?

Everything scared me. It was so unpredictable. One minute you wanted me right by your side, the next you were calling me names and telling me to get out of your room.  Then you would beg me to stay.  It was a rollercoaster on eggshells.  Rage.  Anger. Inability to focus.  Constant movement.  When you got home it was worse than in the hospital.  You put your fist through the walls, threw the keys at me so hard they stuck into the sheetrock. I got good at ducking. I also learned to stand up to you, and somewhat how to not take it personally.  I knew it was brain related and the inability to control emotions, since it was a frontal lobe injury.  So in some ways it wasn’t your fault, but still it hurt so it was very difficult to deal with. You needed to have consequences for your actions, even though you couldn’t control them.  I eventually learned to try to teach you coping strategies, and some of those worked sometimes. I also learned how to adapt my life to what you need.  It has been one hell of a journey for both of us, Honey. We have endured so much, and that is the reason I celebrate this day.  It shows us God’s faithfulness to hold us together despite horrific circumstances, and years of coping with this injury. I am so glad you lived.  Happy 30 years alive day! 

Thanks.  Can we stop talking about this now?  I don’t want to remember anymore.

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Logorrhea (guest blog)

As told told to me by Bill Gunnin

words

Logorrhea – excessive talking or wordiness. This is a very common frontal lobe deficit that many traumatic brain injury survivors suffer from.

I try to be aware of talking too much. I know I do it, but it is difficult to control sometimes. I know there is value in being quiet and pondering things. I am trying to learn how to do it better.  My ideas are like pearls, to be spoken of sparingly. I realize I share a lot about things which have value to me. The problem is I share them in places where they have no value to others. When they walk away, get frustrated, or glaze over, I tend to take it personally.  I share things I have learned, but I speak them at the wrong times.  To stop my rambling, I have to think before I speak. This is similar to learning to take my thoughts captive.

I like to brain storm.  I pull things together which have no logical connection.  It is how I naturally think, by making connections. But as I talk about things, other people, who don’t follow my crazy train of thought, begin to reject or misunderstand me.  After this happens, they don’t want to talk with me as much anymore.  It feels like I am being dismissed, but it’s because of the way I put my thoughts out there. People feel trapped to listen to me forever, they don’t know they can ask, “Can we talk about something else?” If they do that I will bump to a new topic.  However, I might still have the same problem of going on and on about it.

I have, what feels like, millions of thoughts at any given moment.  Since I have trouble filtering out which ones are relevant to a conversation, I try to communicate them all. Sometimes I don’t even know how to communicate them, therefore, I just blurt out and interrupt.  It helps me to process my thoughts out loud, because I am a verbal processor.  I’ll begin to talk about a topic or thought before I even know where I am going with it.  Then I will jump to something else mid-stream.  A certain thought may make sense to me, but as I am talking, I realize it may not make sense to others. People can get frustrated with this. Because I often process my thoughts out loud, it may be off putting to them. Even when you and I are talking, like right now, I don’t always know where my part of the conversation will go. Because I get there in my own personal way, it may confuse people.  Every brain works uniquely, and I often think out loud in an effort to organize my millions of thoughts.  Sometimes I will go over it and over it and think myself in circles, which all comes out of my mouth. So, I keep talking, hoping I may stumble upon the right words so that people may finally understand me.

As I analyze things in the past, where I have labored in vain many times. I have regrets.  I have a vision for my future, but I never get there. I tend to overthink every step and that causes anxiety which then paralyzes me.  I talk so much about things, I don’t always listen well when my mind is churning.  It is a discipline to listen to others. Maybe when my ideas are rushing in, I need to lay them down and suppress the different trains of thought.  I want to learn how to do that better.  My thoughts are like a dirt road or trail. I get excited about them and I want to see where they’re going. I talk faster and faster, trying to get around the next curve. I get jazzed when I am thinking as I talk, but then I go nowhere, because the road is random and leads to nowhere. In the process, I confuse those around me with my constant chatter.

I love questions, because I believe the power of the right question can change everything. I have lots of questions all the time.  I overwhelm other people with them.  People have said feel like they are being interrogated when they are around me.  I stop and interrupt them to ask a question when they haven’t even finished answering the first one. I need to get better at letting them finish.  I tend to jump into where I think they are heading because my mind is racing ahead. I stop them in the middle and ask even more questions. Is it ADHD, head injury, or how I am wired?  I’m not sure.  But the labels don’t help.  Identifying how my brain works does help.

How can I best organize my mental resource to move forward?  Being a talker isn’t a bad thing all the time, because it connects me to people.  They think I am friendly and funny when I am talking. They feel like I genuinely care, which I do. I am a people person and I love to converse with them. But sometimes I over analyze things people say and I ask for more clarity.  Sometimes people think I don’t listen because I interrupt so much.  I have to learn to control my mouth, but I can’t always stop.  Things I am passionate about are wonderful for me to discuss.  For instance, when I am talking to you, I am trying to make you see whatever it is, like I see it.  But when you don’t care as much about it, it makes me mad, because I am trying to make you love it like I do. I just cannot understand why you won’t be as interested as I am.

I do admit, I over analyze all the time.  Part of my mind is very analytical and much of that is not good.  I am always trying to figure out how to make something better.  I want to make the best choice and, to me, nothing else is good enough.  I get that way about processes, like traffic.  I analyze drivers and I judge them.  I hate it, because I presume negative or faulty motivations.  I judge everything by what is the “best” way to drive.  I am critical of critical people!  Yet, I am the same way. I have logs in my eyes; we all do.  Right now, I see in a new way, much of what I have done in the name of analyzing is actually prideful judging and criticism, because I think I know the best way.  My attitude it is I’m right and they are wrong.  Ultimately, it doesn’t really matter.  In traffic, you might save 3 minutes or so by choosing differently, which doesn’t affect me getting to my destination.  I worry about something that doesn’t really matter and is not worth spending the mental energy on.

Talking too much isn’t something I am always aware of.  For example, not too long ago, I told you I had a great interview.  And as my wife, you knew to ask me how long I was in there.  I couldn’t remember, and had no idea until I went back and calculated from the time I arrived at the office to the stop to get gas on the way home. I was there interviewing for three hours.  Because of my past experiences, you knew that meant I talked too much.  I didn’t see it that way.  I thought I had a great connection with the person asking the questions. It wasn’t until I didn’t get the job that I could see clearly, I rambled on and on…which you, as my wife, already knew.

Sometimes when you or one of the kids nudges me under the table or gives me some signal I am talking too much, I just speed it up and try to get it all in faster.  That only makes it worse.  I am not only talking too much, but then I am also talking too fast! I know why you are kicking me, but I cannot stop myself from continuing on sometimes.  Then I get frustrated with you, even though I know you are trying to help me be aware of something I am missing.  I like that we have signals, but sometimes I hate having them. I don’t want to have to look to my wife to tell me how I am doing, but I don’t know how else to do it.  Most of the time, I just want to be a normal person who doesn’t worry about every word.

In the end, I am becoming aware of the reasons I talk too much. I want to be more precise in the language I speak. I am beginning to see that if what I am saying is starting to become unclear, I have to stop. If I have not really thought through what I want to say, everyone will be frustrated, including me. I am learning to recognize when I need to process things internally and organize my thoughts to communicate with clarity in as few words as possible. The problem is that sometimes I don’t see the need to do that until I am well into a conversation. Sometimes I make jokes to cover my inability to stop my thinking. I can blurt them out and be jovial.  It is a coping mechanism.  The good thing about having a brain that is damaged is that I am always learning about it.  The bad thing is that I can’t change my brain to make it work like everyone else’s.

 

A Frightening Moment

michelle-in-front-of-yonah

A beautiful fall day calls for…housework, right?  Maybe.  Just a little.  Then a drive through the brilliant glowing mountains, as a reward.  Bill was changing lightbulbs on the outside of the house in preparation for the darker evenings.  I was inside working to ready the guestroom for any visitors coming our way.  Bill was on a step stool which wiggled underneath him and bucked him like a bronco.  He went down on his back, hitting the corner of the concrete slab of the driveway.  Without his phone, he had no way to notify me of his plight other than to crawl into the house with screams and groans, which brought me running.  I found him face down in the floor writhing in pain, unable to tell me much other than he fell.  As he was pointing to his back, I did an assessment of the situation to determine if an ambulance would be necessary.  I found scrapes, but no bruises.  However, he is notorious for not bruising easily, so that meant nothing.  I grabbed the ice pack and plopped it on the area of concern.  When he got some of his breath back, he told me both his elbows where hurting.  We determined he had somehow put them behind him in trying to catch himself.  Both were scraped and bleeding and required ice as well.

He attempted to turn over onto his back and for the first time I saw his face.  His eye was black.  To me, in that moment, all my world got what I call fear-foggy.  I forgot the back and elbows and immediately asked where he had hit his head.  He insisted he had not hit his head.  However, since he does not bruise, for his eye to be black already I knew he must have really done a number on his noggin.  I was checking for bumps or knots on his face.

He kept saying, “I did not hit my head.  I fell on my back.”

I questioned, “Then why is your eye black?”

“It must be dirt,” he said.

I could feel panic rising in my chest and had to take a few breaths to bring some calm into my fear-fog.  I reached up and wiped at his eye, and removed his black eye.  It was dirt.  My relief was instantaneous.  I even laughed a bit at my concern over a dirt smudge.

I shifted my focus to dealing with the back, which by now was improving pretty rapidly.  He was able to sit up slowly and move, breathe, and twist.  His elbows became increasingly sore, but the back seemed okay.  He managed to stand and I got him to a chair.  Once he realized his back wasn’t broken and he could bend and straighten his arms, he took me outside to where he had fallen.  I have to tell you, it is a miracle he didn’t break his back.  Truly.  The concrete edge he fell on should have snapped his back in two.  I cannot explain to you how scary the whole event was.  But I can say, it showed me something significant about how our pasts effect our present.  The fear-fog that came over me when I thought he had hit his head was immediate.  I could deal with a possible broken back, or a couple of broken elbows…but just the thought of another TBI put me into a panic.

Which made me wonder…what things in my past are still fresh enough to interrupt my thought processes and create a fog?  What fears am I unknowingly living with day to day?  The most obvious ones, cancer and TBI will probably always be in the back of my brain somewhere waiting to jump out on days like yesterday.  But what of the others.  Are there others?  In moments which can be life defining, is fear bigger than life to me? I am aware of how things can change in one heartbeat…an instant.  I am also aware God carries me in those times of crisis when I cannot even think straight for the fog. Fortunately, yesterday Bill was spared any significant injury.  He tossed and turned last night in his sleep, moaning and groaning at the pain in his elbows.  This morning he still insists he is fine and no x-rays are needed.  We will see about that. 🙂 My heart is grateful beyond words that miracles still happen, and in a frightening moment yesterday, we were recipients of one.

Decision Making (Guest blog)

bank

As told to me by Bill Gunnin

Impaired Decision Making- the inability to regard the cognitive processes which result in the selection of a belief or a course of action among several alternative possibilities; the inability to take into account all possible choices and come to a conclusion on a course of action.

The slowing of my processing speed the doctor says is happening, makes so much sense to me now that I know what it is. Processing information takes multiple parts of the brain working in cooperation with one another. For me, all thoughts are coming into my brain with equal importance and intensity.  My ability to filter importance and prioritize tasks is greatly reduced, so everything has equal power as it comes in.  I have trouble sometimes focusing my attention on what I think is most important. I cannot process/filter other things vying for my attention in order to determine the best course of action.  Therefore, I have trouble making decisions of even basic things, for example, picking out what to wear.  I think about all the possibilities of the clothes, the work I will be doing, the weather, what I might need, which shirt works for whatever event I am going to, which one fits better, what color looks better on me.  It seems impossible to sort through all that, plus my worry that I might not be ready for the unexpected.  It is hard to just pick one.  It is easier for me if you pick it.  Same with a big menu at a restaurant.  I drive the severs crazy with my questions because I just cannot decide. It is embarassing.

There are some things which help me to cope with this processing issue. Driving helps me to think through things, as long as it is a relaxing drive and there is no traffic. Like today, we are driving and I am able to talk through this.  Listening to jazz helps me too. Sometimes instrumental jazz music can help calm stuff down mentally.  I say sometimes, because my reactions to these events on one day are different than the exact same stimuli on another day.  If I am fresh it is easier to decide things; when I am tired and out of sorts, mental fatigue sets in more quickly. It is hard to be aware, and to predict when I will have trouble with a choice. It is like all of a sudden my brain cannot process. Flash anger pops up when I cannot figure out what to pick. I can tell I give out so much faster now.  My brain is the same way, all of the sudden it just gives out.  No one can see when it happens or be aware of it since it is internal. This internal torture of making decisions is part of me I can’t share with anyone even if I wanted to because it is a hidden disability.  Hidden even from myself.  It is not objectively measured by factors or tools.

I have been thinking about the piggy bank analogy you gave me last week. It has helped me so much in figuring out my decision making and why it is so hard.  You said I have a piggy bank with only so many coins. I don’t know how to spend my coins, because I don’t know how much things cost me.  I need to learn to budget my coins.  I have felt bad about not being able to do things. I would feel guilty when I didn’t want to go somewhere we had planned to go, and I couldn’t see it was  because I was out of coins.  That comparison to a bank helps me emotionally.  I struggle with self judgement.  Self-awareness.  Self-observation.  It’s not because my character is flawed, it’s just that I have a limited resource.  I don’t like being different than everyone else.  My pride, my self-talk, my trying to judge myself…this new idea about limited resources helps me to understand the troubles are not because there is something wrong with me.  I want to be able to afford the expenses I have, and control my outgo.  I am having a light bulb moment because of this analogy, only I don’t see it exactly as a piggy bank and coins.

money

My mental energy is currency.  A pile of available energy.  But it may not be enough resource for what may be demanded of me, so, I have to work under a budget.  I have to learn to be aware of the cost of goods and conserve energy for more taxing activities. Many goods don’t have a price tag.  The challenge is I don’t know the cost of so many of my expenses…until I am paying it or it is already spent. Preparing is hard to do because I cannot always predict how much I am using or how much I have left.  Sometimes I have frustration, like suddenly in a restaurant and everything is too expensive mentally with background noise and decisions that have to be made. I have no money left and I run out of mental energy. In that moment it is less energy if you just order for me.

This is a practical and measurable way to talk about my life and what I have to deal with daily. It is hard to manage my life.  At times, this is true for anybody.  It helps me to think about it this way…in assets and liabilities.  This separates the injury from my identity.  Separates my struggles, from who I am. I don’t want TBI to be who I am, this new thought makes it apart from me, yet something I have to deal with and manage.  Just like someone who lost a leg, it doesn’t change who they are, but they have to adjust. The problem for me is no one can see if I need an accommodation and it isn’t clear even to me. This view of limited resources gives me a more objective view of the circumstances.  The tipping point is when I use up cash. Then shut down occurs.  I may need a quiet room for days, if my assets are spent.  If I had them, I could still spend.

An element I am not sure about is the on/off, black/white.  Is it gradual?  Does it build up? When I run out of energy it is not like I am walking into a dark room, there may be light in the hallway, light in the door, the light dims until eventually it goes totally black.  It is dark room at times. (I am thinking in analogies now because it helps to compare things.)  I see things but not in specifics.  Details are missing.  It’s like when you are in the moonlight, your eyes see black and white not color.  The light shifts and you stop seeing the details and colors.  You stop being able to recognize what things are.  In my brain, I don’t connect to an idea, and suddenly am done.  It is more like gradually the light  is fading.  It gets dim.  It appears to you they suddenly go out, but to me it seems like it is more gradual.  As a victim, I don’t always know the light is fading.  I think it is related to my awareness of it.  Self-awareness is a hard thing for most people, but for brain injuries it almost impossible.  Now that I think about it, my shut downs have caught me unaware.  Slowly getting darker.  Sometimes my mind has a sense of peace.  Relaxed, like I am not stressed.  Part of what I am wondering about is if everything I do, spends currency.  I would like to think there are some times maybe it’s not diminishing.  Maybe I am helping my currency increase. Sometimes things feel effortless, other times I am conscious of effort taken which drains me. The weird thing is that sometimes they are the same things, and they have the opposite effect. Hard to predict.

Playing the piano is an example of this. Sometimes I sit down at the piano and I am doing it for a purpose.  I sit down and play and it flows.  Then when someone says, ‘sit down and play,’ my mind goes blank. I cannot think of what to play, and suddenly I am stressed.  I cannot make a decision of what song to play.  A lot of times I think what I am playing sounds stupid.  Other times it is good.  Sometimes it is interesting.  I want it to be interesting.  I feel like anybody who plays the piano can play what I can play…and that what I have is not all that special.  It feels so simple…no big deal.

However, I know I carry some element of worship to the Lord that is unique to me. There is a certain kind of ministry of peace and an ability to help people tap into it and feel it. I do admit it.  It is a gift I have.  I don’t know how special it is, not to diminish it, but how unique is it for a broad audience?  I don’t degrade it, I just don’t know if everyone will view it as something of value.  Just an honest thought, not to take away from what I have. I know what I have musically is different, but I don’t know how many people it touches. I have no doubt part of me is ministering to people…to minister the Father’s heart to his people.  I have other things too I think, but that is one thing I know I carry.  It has a place.  I am not always sure if when people ask me to play if it is the place for me to pour that out or not.

Because of this new perspective…assets and liabilities… I am beginning to understand how to regulate the importance of the thoughts that bombard my mind. Now that I understand I have limited resources.  It saves me energy when I let you pick clothes without second guessing it, or using the GPS instead of trying to guess about how traffic will be on every possible route.  I am learning to take one thing at a time and to learn to budget my resources and to pay attention to the timing of things. I have a new appreciation and understanding of the verse “Taking every thought captive…” 2 Cor.10:5

If you are a TBI survivor or a Caregiver of a TBI survivor please share your thoughts with us in the comments.  We’d really like to know if what Bill shares here is helping others to see themselves/loved ones differently.  Is it beneficial to you? 

Flooding (Guest blog)

As told by Bill Gunninflooding.jpg

Flooding- the inability of the brain to filter, leading all stimuli coming into the brain at one time with equal intensity which causes the inability to process each piece of information individually.  The brain overloads, and either shuts down or gets agitated in its frustration.

I feel bad about flooding when it happens.  On one level, it seems selfish to me, because I want to count others as more important than myself.  When I flood I shut down, wherever I am.  I remember we went to a wedding, and were enjoying ourselves, but all of a sudden, I felt the need to leave.  You were not ready to go, but you saw me walking out in the vineyard and realized what was happening, so we left.  It is hard to remember.  I remember feeling overwhelmed.  I remember walking into the vineyard.  Don’t remember much after that.  A bad feeling that I cannot describe…like something was wrong with me and my thinking.  I felt bad about that, because I knew you wanted to stay. It seems to always take you away from things you like, and it makes me feel selfish, but I cannot control it.  Most of the time I don’t even recognize it at all.  You see it before it happens, and you make adjustments so that it is circumvented by getting me out of the situation. I had no idea you were doing that and have been doing it for years! I am just now seeing it.

Flooding can also be shut down mode or melt down mode.  Agitated or tired.  Sometimes it takes me days of recovery after any flooding because it leads to mental fatigue.  I am zapped and cannot think clearly for a while.  It’s like my brain needs sleep or quiet to recover. In my mind, it has seemed like a character flaw because I leave you to deal with things on your own.  I can’t help. The ideal me, my image of what I am supposed to be as a good husband, is to take care of you.  For so much of our marriage you have felt alone, unprotected, uncared for, and unguarded.  I am much more of a failure than I want to see.  I am not being true to what I feel I am supposed to be.  I am not being responsible with what I have been given.  When I flood, I have to step back and that leaves you alone.  I hate that and it makes me feel bad.

Sometimes there are certain people in my world that trigger my ability to handle flooding when it happens.  When my brain is exhausted and tired, and my filters are not working well, I can shift to anger more quickly. People push my buttons easily because my brain isn’t working right.  I lose my control to push back my feelings, so they come to the surface.  Like in traffic…I get mad…I obsess.  Drivers are reckless and don’t even care how what they are doing affects me.  I feel resentment, because I try to be aware of others when I drive.  How dare they do something I wouldn’t do! It offends me and I take it personally.  It manifests in traffic, but I don’t really think it’s about traffic at all.  It is flooding, and anger is a cover for the fact I cannot process why people act like they do, plus all the stimuli on the road, plus how to drive safely, all at the same time.   It is difficult.

It’s embarrassing to say, these symptoms are things that I haven’t been willing to look at for thirty years, now that I am willing to accept them, I have a lot to think about and new ways to think about things.  Now I am thinking about my own self-coping. I am recognizing elements, so I might can start to tell ahead of time when fatigue is near. I want to process and identify factors in my life that add up to flooding so I can predict ahead of time. What does and does not add to the overload.  I am talking to you right now, and I cannot answer questions with music with words playing in the background.

The doctor said my processing is slowing down, so flooding is on the increase.  It makes so much sense to me now where it never did before.  Somehow, I look at that report and I read my brain function is decreasing in processing speed and it makes sense.  That is why I have trouble with ideas that feel fast, but are also slow. My mind is so fertile, I know in my head I think so many thoughts.  My ideas are always generating, so I can flood myself with my own thoughts.  Processing is slowed so much, I cannot process all that I am thinking.  Thinking fast, processing slow…so it’s like the train is not moving.  Distraction.  I am in no hurry to put ideas out of my head.  They keep my mind occupied. It’s a point of stress for me…it is overwhelming.  My brain has trouble processing all I think.

There is not a lot of outside noise, it is internal noise.  Emotional levels are excited and happy…but I don’t have an outlet.  It’s hard for me in those moments. I don’t know what to do with that.  I am pacing and agitated. I need release.  When I am happy, I feel enormous exploding Grand-Canyon-sized hope, as well as gifting, desire, and passion.  Huge.  Bigger than I can compare it to.  With fear I think, I might be supposed to be doing big things, and that’s the part that scares me.  It feels so real…but then I wonder if I am making it up.  Now I wonder if it is a processing difficulty; with good things.  That leads to a roller coaster.  Yet, right beside all that hopeful stuff is the hope deferred. It’s a catch 22.  My own private torture. To have vision and no way to make it real.  I feel chained in a cell…someone says you are going around the world…but I am chained in a cell no way to get there.  It is an impossible situation with no answer.  The problem is my thinking isn’t reduced, but my processing ability has slowed.

I think flooding is a good word for it.  It’s like I cannot receive any information when it is happening.  I am having thoughts, but when I am in flooding mode I cannot even tell you what my thoughts are.  You know how you are frustrated, when there is TV, radio, talking, dogs barking…lots of noise?   That is what it feels like in my mind when I flood. I have different levels of stimuli and thoughts. I am interested in talking to people.  On my own or with others I over think, asking tons of questions before the next sentence.  More thoughts than I can process myself.  A lot of the time I do it verbally to other people.  I flood them. New ideas and discussions are always more interesting than old.  New ideas excite me and motivate me, so when I am talking to others I ask tons of questions and focus in on a person.

I desire to center in on the communication but, then suddenly I am getting so many lines of communications from my environment. I want to focus on each noise individually.  It’s like white noise.  When you listen to it, there are tons of signals, but nothing distinct.  I cannot focus in on one thought or idea, because there are too many at one time.  It is an auditory thing.  I can hear, but I cannot understand. It is why sometimes I ask you to repeat the same things over and over. I cannot grasp what you are saying in the moment.  It is the same way with my thoughts.  All coming at once.  I cannot pull everything away and focus on one thing.  As I say all of this it reminds me of a challenge I have with word retrieval. You know, ‘What’s that word?’  I cannot find it.  It’s like my mind goes blank.  Flooding is the opposite of that, there are too many words and I can’t pick just one.  It doesn’t take much for me to flood, lyrics in music can cause it or background conversations.  It is much worse when I am tired, and most of the time I don’t even realize I am doing it.  You know it, but I don’t and that makes me feel terrible.  I can say it’s nice to have a word for it and a definition.  Somehow it makes it easier to see and accept.

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.