The Brick Wall

After having enjoyed several weeks of uncanny energy and focus, I hit the proverbial wall, understood only by those who have hit similar walls with their injury or illness. Upon realizing the wall has been reached, which is usually when I have basically face planted with it, I struggle with overwhelming panic, frustration and yes, a very deep despair. I hit the Internet and Google myself to death, looking for answers, advice and validation. I always come away with the same conclusion...  This is the new norm for me. Knowing first hand that it cycles in and out, helps a little, but only on the days when I'm cycling up and not down. This week I took a MFS (mental Fatigue Scale) just to see if it was as bad as it appeared to be. I scored a 30.5, this isn't a test you want to
to score high on, which is above the level of someone working with a mild TBI, above the level of someone on sick leave from a TBI and above the level of someone who has suffered a stroke. The results didn't exactly lift my spirits, but they were no surprise. The one thing I know is.... I may be down, but I haven't been overcome. I'll keep trudging along like I have for over 3 years, until the tide turns (oh and trust me it will turn). When  it does, I'll soak in the energy like
a dry sponge and cherish it until I'm rung dry and hit the wall again. I may not have a green thumb, but I'm determined to have roses (without thorns please) growing on my proverbial brick wall so when I've got my nose, face planted in the middle of it, I'll still be able to smell the sweet aroma of life.

Tidbits

http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.htmlshare

I couldn't have said it better myself. It is so easy for me to become verbally overwhelmed these days. It seems like there are words, words, words being spoken by everyone and sometimes I just can't take it all in or sort it all out... I feel overwhelmed. If you add sights, sounds, and smells altogether, like at the State Fair, it doesn't take me long to shut down. On the way home from the fair (1.5 hr drive), I didn't speak, and I really didn't want to be spoken to because my brain was DONE. Brain Fatigue haunts me less and less, but it's still there. At times, I actually feel verbally accosted. When I am approached by someone with a sudden onslaught of words, it literally makes my brain hurt (not in a physical way). If I'm in a silent mode and someone begins a rapid conversation, my brain becomes stunned, like being aroused from a deep sleep. Silence is golden for me now... I crave silence and if you know me very well at all, you know this is unlike me, I am, or was a very social person. I know for a fact that at times I have come across as rude, aloof, or as the article says, that I am uninterested, but I'm really not trying to be. My immediate tendency is to retreat... As quickly as possible. My brain can only process so much at one time. This article explains it perfectly! BrainLine.org offers the tidbits that let me know that I'm not crazy... It is all in my head... Literally. I've highlighted what I struggle with the most. Any yes, in case you think I'm beating a dead horse to death, I'm really not. I don't seek your sympathy or attention, I seek understanding, for me and those I love and for others who struggle with a TBI. I have developed an amazing ability to hide my struggles and have become a gifted actress at portraying the one I once was, the one I remember myself to have been... Which is also exhausting. I try not to talk about it much, because I don't want the changes to define me, but it is important for people to know there is much more to a TBI or head injury than meets the eye. I am blessed beyond belief that I am here today, blogging my struggles so others will understand. TBI recovery is a dark, twisty, lonely road, but it is a road I am happy to be traveling because the alternative was more real than I like to think.


I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.
My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.
Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.
I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.
If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!
If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.
Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.
Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.
Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.
Please have patience with my memory. Know that not remembering does not mean that I don’t care.
Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.
If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.
If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)
You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.
If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)
If I seem sensitive, it could be emotional liability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.
We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.
Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

As Simple as That

My daughter recently met a young man who had just returned from Afghanistan and who suffered a TBI while he was there. Not only has this man seen the atrocities of war, had close friends die before his eyes, but also struggles with the difficulties of recovering from a traumatic brain injury. I can't even imagine what he must be going through. As my daughter explained to me some of his behavior and some of methods he used to cope with the the aftermath of his injury, I found myself hurting for him and relating with his struggle. I'm not for one second suggesting that my situation was as devastating as his, but I can certainly understand a little of what he is going through. Today marks the 2 years, 7 months and 6th day of my journey. Without a doubt every step, every day has been a challenge and a hell that cannot fully be expressed with words. During dinner this weekend the subject of the injury came up. My daughter was on deployment when the injury occurred, and as my husband began to talk about that day, he went into greater detail than he had previously shared with her. She admitted that until she moved back to Oklahoma, she didn't fully understand the extent of how the injury had changed me.  She told me someone close had told her that I could simply recover from it, if I chose too. And herein lies the absolute helplessness someone who has had a TBI deals with on a daily basis. Not everyone suffers a personality change after a TBI, but those of us who do, would do anything within our power to get back the person we were before.  Imagine for a second, if suddenly most of your personal, emotional, and spiritual attachments disappeared.... Ceased to exist.  Imagine looking into the eyes of your children, your spouse, your parents, and your friends and not feeling any of the intrinsic connections to the most important people in your life.  The loss of some of your memory is one thing, but the loss of who you are is not something you can simply "Get over". Our sense of self is what connects us to our world, to each other and more importantly to ourselves, not to mention the spiritual connection to our God.  In the last couple of months, two of my children have been told by their counselors, that they must mourn the loss of the Mother they knew and embrace the woman I now am. The depth of the sorrow I feel for not being able to bring their old mother back, is a vortex of failure I will forever feel. When the movie "The Vow" came out, someone asked my husband if we had seen it. We watched the trailers on the computer and looked at each other and simply shook our heads no. We are walking this path and though it may make for a touching movie plot, we find no entertainment value in watching it played out on screen.  My therapist asked me a few weeks ago, what I missed about the old me.... "Oh, let me count the ways" Besides missing the feelings associated with my most important attachments, I miss knowing how I would react to any number of given circumstances. I miss trusting myself. I miss being a "fix it" person. I miss my compassion, empathy and passion. I miss knowing that I KNOW who I am and what makes me tick and I miss liking myself. I miss feeling the presence of my God, the spiritual moving of him in my soul and the feeling of being at one with him and myself. I miss dreaming with expectation of those dreams coming true and miss the joy I found in life itself.  The first few weeks and months after the injury seemed like one long out of body experience. Slowly but surely my mind came back to my body, but not entirely. I still get the sense that I am watching my life from afar without the means to return fully to that which I was. That being said, I am better than I was. I operate not on instinct, but from drawing on the remnant of who I used to be and I still hold onto the hope that some day I will return to being that person and leaving the new me for the familiar comfort of the me I knew and loved so well. Until then, I am on auto pilot, or an actress playing the part of me. Some days I'm not sure where this plane is headed, or how long I can continue the roller coaster ride.  Yes, if I could I would "Get over it", but sadly, it's not as simple as that. My salvation has been those who continue to love the new me as if nothing has changed. It's for those people that I desperately dig the depths of my soul to bring myself back to the surface.

Alice Finally Hits Pay Dirt

What the Alice in Wonderland movie (or book for that matter) didn't tell you, was when Alice fell down the rabbit hole, she was so dazed by the fall, that it completely messed up her workout routine. While she was running around talking to crazy rabbits and having tea with the Mad Hatter, she was also packing on some serious butt fat.  No, that was no petticoat under her apron dress, that was all her :-) Yeah, it's not exactly Hollywood movie material, but trust me, that's exactly how it went down. If you have no idea what I'm talking about you can go here

http://tbirecovery4sp.blogspot.com

or just exit and close. Either way makes me no never mind.

I've had the almost flu all week. I never really felt like I was going to die, so I'm pretty sure it wasn't the true flu, but still, I've felt pretty lousy. Tonight when I got home I was laying on the bed talking with my husband. Well, I was pretending to listen while my mind went running down 100 different rabbit trails because that's what people with ADHD do. But, to his credit he probably thought I was listening to him, cause he's just adorable like that.  When there was enough of a pause in the conversation that it wouldn't be awkward and totally obvious that I wasn't listening in the first place I jumped up from the bed and headed out of the room....  "Where you going?"  I told him I was just going to dig through the closet underneath the stairs and take a look in my skinny clothes tote. When I came back into the room with an armload of clothes he shook his head and said.... "Boy women are so different than men."  Well, duh! That's what makes life so fun. Think about it for a second. If the earth was full of nothing but men... How boring would that be. Women add spice and high heels to life, but that's just my opinion.  I thought he was referring to the fact that most women have a skinny side of the closet, a fat side of the closet and then somewhere in between side of the closet.... Because yes, things flucuate with us, can I get a witness. No, that wasn't what he was talking about, he just thought it was weird that I could be so sick and then come home and want to try on clothes. Well let's be honest, it's only because I was going down in the size of clothing I was trying on, had it been the opposite, I would have been sicker than a dog and wouldn't be trying on anything.  It's just one of those women things that men could never wrap their minds around in a billion years and exactly why we make things so interesting. So he watches me try on an armload of clothes (with much interest I might add), and to his utter joy (because the evening would not have gone well if nothing had fit), all of my old clothes fit.  No, I am no super model, never will be, but thank you Jesus I can finally pack the fat side of my closet into  totes and tuck them under the stairs.  Now I won't have to go buy all new clothes.... But come to think of it,  I still need to replace those jeans the EMT guys cut off of me and I do have a wedding to go to. Maybe a little shopping but certainly not a whole wardrobe :-)

Walking In the Shade

 

"False friends are like our shadow, keeping close to us while we walk in the sunshine, but leaving us the instant we cross into the shade."
Christian N. Bovee

 A friend on facebook posted this quote the other day. It immediately jumped out at me because I wasn't just in the shade last year, I was completely in the dark. I can honestly say nothing will teach you about being judged, critiqued or deserted like walking in the dark places for a time. You can't really blame others when you take a sharp turn with your personality and actions, but it still stings and makes you realize that most friendship are of the conditional nature. My journey has made me take a step back and take a good look at my judgments toward others. If I can't love in the dark times as well as the light times, what good is my love? If I can't offer companionship during the times of difficulty, why offer it at all? I don't want to be a good times only friend, I want to be a through thick or thin friend. When the seas of life get rough and you lose your way, that's when you need the life vest of a true friend wrapped around you. It really is possible to love someone without agreeing with everything they do. It seems like the position of choice is to stand outside the shaded areas until they wonder back into the light instead of going into the darkness and being a light which points them back to the sun (or should I Son).The other day a good friend (who I take particular pride in harassing) said.... "Yep, the old Jac is back." He had know idea how much that meant to me; it literally brought tears to my eyes. I can't even explain the difficulty of the path back, nor the lessons learned while I was there. Walking in the shade isn't fun, but it is very enlightening. It certainly made me look at things (and people) much differently. 

 "Dare to reach out your hand into the darkness, to pull another hand into the light."
Norman B. Rice

 

 

The Dark Dance

I went to get my nails done this week and my friend gave me a belated birthday present. Since I was still a little tacky (not attitude, just the nails), I asked her to open it for me because I couldn't wait to see what it was. She opened it up and it was a framed print that said...

Gosh!!! I got tears in my eyes and I just gave her the biggest hug because she couldn't have gotten me anything more perfect. I won't retell the story, if you wish to read it you can find it at....
http://tbirecovery4sp.blogspot.com/  Let's just say last year was a difficult year. In fact it was so clumsy and awkward it makes even my skiing look graceful in comparison. If you've ever been fortunate enough to see me ski, you would understand what a statement that truly is. My favorite ballet is the Nutcracker. I would go see it every Christmas if I could. Last year had it's ups and downs just like a ballet. It was a roller coaster of emotion, events and drama. I wish I had been a more graceful dancer, but then again if I were graceful, I wouldn't have a story to tell. As Momma would say, "It looked like a bull in a china cabinet." Looking back from this side, I realize more and more just how dark it was. Thankfully I wasn't left out on the dance floor alone and it wasn't the final act of the ballet. I stumbled into His arms last year and did a dark dance in the shelter of His love. I'm living in daylight now and yes, I'm ready to dance, but this time I think I'd rather break out the disco ball and boogie down.

Ecclesiastes 3:4

⁴ a time to weep and a time to laugh, a time to mourn and a time to dance
  

The Sound of Music

Last week on our vacation was the first time in over a year that I had played the piano. I have dusted it, I had polished, but I hadn't played it since my injury. Last week  the piano bar must have broken the ice for me on that desire again. Last year my brain could barely remember my name, much less co-ordinate with my fingers to come up with anything related to music.  I promised my puppies would once again lounge in the living room with me lulling them to sleep. For some reason I always seemed to play while I was waiting. Waiting my for husband to get ready, waiting for him to get home, waiting for someone to pick me up.

Tonight I lay my beloved murder mystery aside and thought, maybe I'd play a song. When he walked in the door from work, I was just finishing a tune. He closed the door behind him as I rose from the piano bench, and he stopped where he was..... "Wow! It's been a long time since I've heard that sound" He said

"Heh, I thought I'd give it a whirl, see how it went."  He just smiled and walked out, but I could tell that little by little.... tiny parts of the person I used to be is still returning.... They're like little fragments of sand washing ashore. Who knows, maybe by this time next year, all of the little pieces of Jac will have returned and he'll have the old me back as a whole, good as new and as ornery too. I know he's missed that part the most.... LOL!!!!

Please Don't Give Me a Hard Time

Discounting the last year, I'm not one who typically has the urge to give someone a piece of my mind.  Mostly, because there isn't that much to share, but also because it's just not my nature. Some people thrive on setting themselves up as judge, jury and executioner as well as the moral authority on all things and all people. The people they target don't necessarily have to have anything to do with them.... The situation may not effect them at all (as in it's none of their business), but still they are just itching to jump right in the big middle, with judgement in hand. I just don't think I have that kind of energy, plus.... OMG what if I was wrong and made the wrong judgment call?  I had one of these people digging in my garden last week, trolling up things they knew nothing about, making all the wrong assumptions and then publicly trying to crucify me.  I was laying in the bed with a raging fever and felt like my throat had been scalped by Indians (no offense to Indians). I got a notice on my phone about what this person had said. It was like someone pulled a rip cord deep inside of me and righteous indignation (well there wasn't much that was righteous about it) came shooting out of my ears. Before I knew it I had allowed this person to drag me down to their level (I should have beaten the dog out of them while I was there, JK). Later, when the fever (legitimate fever... I had strep) had passed, I was humiliated that I had taken the bait like a catfish lurking under a rock waiting for a worm. Last year when I was in the throws of recovery from my injury, I had a lot of those moments.... Oh how I wish I could take them back. It was like a ball of fire would hit the wrong button and I became a nuclear weapon that had no control. The head injury was a legitimate excuse, but still the thought of me acting like that has humbled me greatly... Because head injury or not, if it hadn't been hidden in my heart somewhere,it  wouldn't have been able to come out. I may have a hard time forgiving myself over this, but I have to believe, in faith, that God is my judge and I'm good with Him. Some people live their entire lives in this state of ugliness. I am so thankful that my state was temporary even if it did seem to last an eternity. Why would anyone willingly live in such a state? It truly baffles my mind and makes me terribly sad. There are countless injustices that happen every day in every one's life, but you can't live your life set on go (or in constant attack mode). Thinking over the last year, when I remember those feeling of being out of control, it brings so much shame to me that as I blog tears stream down my cheeks. I so don't want to be one of those people. I truly want to have a compassionate heart even for those who are blatantly making bad (and sometimes wicked) choices. I just pray that God will keep my heart ever tender.... Even to those who mean to cause me or others harm. If it's a process for me (someone who doesn't have a mean nature), I can't imagine what it must be like for those who do. I feel sorry for those who do choose to live a life of hatefulness, even if they attempt to drape a cloth of "best intentions" around it and advertise it as justice.I saw a facebook post the other day that said... 

"There comes a time in life, when you walk away from all the drama and people who create it. You surround yourself with people who make you laugh, forget the bad, and focus on the good. So, love the people who treat you right, pray for the ones who don't. Life is too short to be anything but happy. Falling down ...is a part of LIFE, getting back up is LIVING"

Gosh, that is so true. I had someone ask me the other day why I didn't have any desire to be around certain people. My reply was as simple and straight forward as it could be... "Because they are mean hateful people" I don't have the time or the energy for that. Life is too short to live it in the presence of those who try to make it harder than it is. Give me happy people, give me laughter, give me joy, but please don't give me a hard time.

 

 

 

 

 

Dazed and Confused and Totally Slap Happy :-|)

 
A Facebook friend posted the other day that she was "Dazed and Confused" about something she had seen. Sadly or actually happily, I've become quiet content in my dazed and confused state. It's very refreshing not to feel like I should know it all,or that I should have all the answers. I don't feel the need to be a big bag of wisdom or someones spiritual guru because of my vast depth of biblical knowledge and unsurpassed worldly experiences. Nope, I'm happy and content to skip happily along in ignorant bliss knowing that there are plenty of other people out there keeping up the charade of "Knowing it all". Even in my dazed and confused state I have enough sense to know if someone claims to know it all or have it all under control I should high tail it out of their presence

and "Run Forest Run!" I run to the sheltering truth that I am mere human, highly flawed and can only be made perfect in Him. Me and God have this thing going on, I trust him to know what's going on and he expects me to keep the best attitude possible even when I feel like what's happening sucks great big green apples. He hasn't asked me not to mention that it sucks great big green apples when it does (trust me he hears me loud and clear, but I tend to think he laughs at me more than he gets upset with me), but to trust him that the green will turn to sweet... Eventually. Ever since I've laid it down at the foot of the cross and turned

Maxine is much more of a
spiritual wizard than
people give her credit for!

my back on what other people think and say (which is difficult for one who has been a people pleasing machine since I was a wee one), I've been a much more content person.  Just being able to rest in the knowledge that he knows it all and has it all under control leaves me free to be be.... dazed and confused in a good, happy-go-lucky kinda way. My perfections, skills, knowledge and wisdom may be few and far between, but my joy has the ability to be limitless if I allow it to be and I attribute a lot of that to the freedom I feel in my dazed and confused state... In fact you could call me slap happy these days.  I used to get my feelings hurt when I was in a conversation and people just tuned me out because they thought they knew it all and there was nothing I could add to their knowledge. Now, I'm off in my own little universe, totally out of touch with reality (or so they think, hehe) and I don't even get offended when they cut me off in mid-sentence, I pretty much expect it from some. I just smile and think to myself.... "What I was going to say could have been really profound"(probably not, but there is always a slim possibility). Yep, dazed and confused keeps other people from expecting me to have all the answers which is expecting WAY too much, even if I do have a lot going on. If anyone would like to join me here I can tell you the zip code is I Peter 5:5-10 and the taxes are way less taxing on the soul and the rewards are amazing!!! Really, you should try it, you just might like it and become slap happy too. Trust me, it's a good thing... That's what He keeps reminding me over and over again.

When I Needed It Most

God can mend a broken heart but you have to give him all the pieces

I had to say goodbye to someone special this week. Someone who helped me sort through the shattered pieces of who I was. Together we sorted through the mess of the head injury as I tried desperately to make the pieces all fit into the old frame of a picture I had in my mind. It's been a process, it's been a journey.... a very lonely journey, but they made it seem possible. It's funny how you think the ones who will accompany you on a journey, aren't the ones that do. A door opens, and someone you never imagined walks through to hold your hand, comfort you, as they whisper the words..... "It's going to be ok." It's a special person who can say those words and actually make me believe it, but then I suppose that's why God sends them at the time he does. Just when I needed it most.