Wednesday, December 17, 2014

The Christmas Scale

    As I am saddened by the death of a very dear uncle, whose wit and wisdom will be missed dearly, I am thankful for any, "good news" I hear!  Of course, my uncle is no longer suffering after a very courageous, and brave four year battle with cancer.  He was a believer who knew his sins were covered by the blood of Christ so, there is the assurance his soul is now in heaven!  This too is good news, but there will still forever be a hole in all our earthly lives as we will miss his amazing sense of humor!  Even through the struggle, he made us laugh and smile every time he was with us! He was also the same man who took in two preteen/teen girls for a week every summer and spoiled them rotten! Those girls are my sister and me! Those moments with my aunt and uncle are locked forever in my broken, blood seared brain! Thank you Lord for my uncle and his wife, my amazing aunt, whose laugh always added to the humor of my uncle's wit!  Thank you Lord for joy among deep sorrow. Thank you that in the basic "scales of life" there are strategic pauses. They are not mistakes but they make it beautiful and meaningful even when it is hard to appreciate them and difficult to wait. I don't know about you but I am a rather impatient creature. I hate waiting. There I said it, waiting for a call, waiting for results, waiting for food to cook/bake, waiting for a red light. I am so fixed on the steps to the process  following the wait, that it makes me anxious.Sometimes I even look around me and it seems everyone else is just playing away, their scales are fluid and smooth. I get frustrated and even angry that I have to pause. I have to relax, recover, unwind my tired brain. I can't play my scale from beginning to end without pausing or I miss notes all together! Sometimes I even need to be forced to pause, without looking around me or expecting it to be the exact same scale it used to be.  I hear this still small voice tell me, that my scale is different it is a minor one and sometimes sounds and acts out of tune! It even frustrates me that I can't be at all the services/family time this weekend. I have to pause, wait, take a couple "bars to rest"(my best musical comparison) if you will.  You can only imagine how much I hated the "pause" in 2005 when life stopped with a ruptured aneurysm. No more searching for a teaching job, no more graduate school, instead it was rehab and relearning how to live. And learning how to "pause" and be okay with the memory of functioning without the capacity to do it! PAUSE, it is time to take a deep breath before continuing on! This current, sad "pause" here and now is hard to take, but the Lord has a purpose in the big picture to make it more beautiful! Christ even "paused" from heavenly dwelling to live a perfect life on earth because we couldn't. He "paused" to hang on a cross, shed his blood to cover our sins. These "pauses" are the reason I have the assurance of seeing my Uncle T, Grammy O and other dear ones who share this faith! So, don't forget to "pause" this busy Christmas season (even if you don't have a Brain Injury) because "Joy to the world, the Lord is come!"

Monday, December 15, 2014

oh Christmas..................

So, I had written a post a few days ago to "vent" about my day so I could then......"LET IT GO." My sister teases me that she is going to buy me the "singing Elsa gloves" from the movie Frozen. The idea is you put them on, hit a button and they sing the "let it go" song. We laugh and laugh over this!  Guess, you'd have to be there or spend time with me to truly get it! I will share my day with you briefly......I broke my own strict rule about avoiding all stores at ALL costs in the month of December.  I pick up the basics at Stewart's and try to just do without the "non essentials."  Don't worry I "hoard"  toilet paper and such things from BJs before Thanksgiving! So, long story shorter, after days of snow I was out and about and decided it didn't look insanely busy, I'd just stop quick for whatever I happened to be fixated on that day, it was something silly like hair dye.  I survived the store and even made it through checkout then bolted out the door!  When I got home, I began looking for the bag I had just bought, I did buy it right (it's Christmas time, this is not a silly question)???  I had a receipt in my hand so I called said store and indeed my bag was still there. Great, this means the next day I will obsess about getting my bag . I decide to break my rule again and retrieve the lost bag.  I am too frugal to let $5.00 worth of hair dye go unclaimed! I also have to drive right past said store to pick up my engagement ring which was having new prongs put on it to replace worn ones. I get to that store, get into an inanely long Customer service line but then talk a cashier into just grabbing the bag for me. I went to pull out my phone to stay on track with my phone?????? NO phone! My phone is my life line and security blanket.  My real concern, in all of it, was if hubby tried to call me and I didn't answer for hours.  I decided it was best to just go back home and grab my phone which also had my "to do" list for the day.  Otherwise, I may get distracted and end up looking at 'who knows what' for 'way too long!' I get home and sure enough hubby did try to call  me, text me, and was beginning to get really nervous about my lack of response! With a heart attack averted, I determined that I always underestimate my need forgoing back to basic memory strategies during the Christmas/stressful season/s. Back to checklists before leaving my house, it is!!!! I then carried on with my day and was reunited with my engagement ring so, the day was starting to shape up! Not pushing my luck I just went home to take a much needed nap! But, the heavy snow made me nervous we might not have power for long so I took a shower, just in case, since I admittedly just threw a hat on and didn't bother that morning!! After a shower and a nap I decided to tackle taking pictures of my dogs wrapped in Christmas lights! Not my "brightest" idea! I moved the tree ever so slightly (and gently, of course) for a better view out the snow covered window!  There was a slight, okay, definite cracking noise!  Yup, the leg, okay entire base, of my fake,  pre-lit tree (it's all I can tolerate in the crazy season people, don't judge) cracked right off.  I tried to redeem myself hoping it could be rigged together until hubby got home to "deal" with it! Now, mind you, my left hand has never regained full mobility!

thankfully, married "Mr Fix-it"

the day ended like this..................NAILED IT!

But seriously, this is the house I come home is good!

The following day was miraculously a good one and all of the Christmas busy was too much!  I suddenly needed ORDER again.  I sorted out my entire desk drawer and then attacked the "junk drawer." I could simply no longer live and function with their daily chaos. I was ruthless and it felt good! Thank you Christmas for my "greater than usual inability to tolerate disorganization." My hubby was nervous about what  of his he would find missing......hehehe! Still having a good day, hubby too me out to eat so I didn't have to think about cooking.  The evening ended with Christmas lights and a stop at a bakery I had never been to, but now that I know it is life just got so much better!
And, there is nothing like a day to change your whole self centered perspective on how you are already over crazy Christmas! I have a very, very dear uncle who has bravely and courageously been fighting cancer, with humor and grace! The cancer is progressing rapidly now and my heart is heavy; very, very heavy on this temporary earth. And, then comes the moments we all dread. As survivors, this hits home differently perhaps!  There is also the struggle of "wanting to be there" for and with your dear family while still living with a broken limited brain (different limits than most people your age have.) I'll always be at high risk for everything.  I will always need to respect those limits and pray for avoiding migraines, which only up these risks!  There is the ever present reality that I don't simply "bounce back" and it is physically/mentally impossible to just push through it like I used to! This is an ever present struggle for me with often "self imposed guilt" as I perceive disappointing my family, the family whom I love dearly and would do anything for! I am blessed that they have all graciously walked this journey with me and are quick to forgive and understand!! But struggle, I still do!

Saturday, December 6, 2014

Christmas baby steps!

    So, last year I tried to create some "Christmas cheer" by making hubby his favorite sugar cookies! This year we put the tree up together (yes, still fake) AND instead of my 'boring, 75% off, coordinated red and silver bulbs' we dug out all our "old ones" from childhood through the last 12 years of marriage.  This is the first year since my aneurysm, they came out and were put on the tree.  It just seemed too overwhelming in recent years.  All these 'orderless' ornaments and the decisions, oh the decisions.  Which ones do we put on? Where should they go on the tree??? Is it too heavy for that branch?? the list is endless so I just didn't bother.  Pulling out my red and silver bulbs was so much easier!  Each one was the same so all I had to do was space out the colors evenly (hahaha, why even bother with that, silver, red, silver, red, repeat, done.)This year after a glorious, quiet day at home, hubby made me pull out the "memories." Probably, truthfully part of the overwhelming part was the fear of "not remembering" when I pulled them out. Then I would have to deal with that all over. As it turns out, I do remember most of them and the others, hubby didn't either, so we just guessed where they came from based on who it 'looked like' from gift giving past! Baby steps still.................
Fancy Lenox wedding gift! It goes perfectly with the tree skirt and matching stockings, lovingly made for us as a wedding gift too!!!

Dogs under the tree never gets old to me!

Wednesday, December 3, 2014

Auditory Processing Disorder (APD)

Welcome to a simulation of my world. It is exhausting isn't it?? Yes, having a conversation is truly like this because seriously, when are we ever just in a quiet room with nothing else going on or nothing else in our heads that we know we have to do???? So, if I snap at you or seem irritated please don't take it personally, I just can't sort it all out like I know I used to. I am still on an acceptance journey, all my own :-) Yes, I am slow but, it is well!!

Tuesday, October 7, 2014

Thoughts on The Crash Reel now published

     I found this unpublished thought from this summer. I'm not sure why I never published it. Perhaps, I was still processing it then forgot to come back?? I'm sure I had more thoughts than I ended up writing about but they might just be lost forever!

     "The hubs" and I recently watched The Crash Reel. It was a really, really well done documentary on the crash and ongoing recovery of 2010 Olympic snowboarding favorite Kevin Pearce! Kevin spoke at a Brain Injury conference in 2011, not long after his injury. I actually got to talk with him the next day as he sat on a bench waiting for his mom to pick him up. We talked about our struggles and I offered my coping strategies. I tried to encourage him that it would get better, SLOWLY! We talked about our families and what an important role they play in recovery and acceptance of what happened!  I knew he would never remember that conversation but I hope at the moment it was what he needed to hear.

     In one scene of his documentary, the camera caught when somebody woke Kevin up from sleeping.  His eyes popped open and he just stared at the camera. "Hubs" looked over at me very solemnly and says something like, "That was the exact same face you used to have;  that blank, panic, I'm trapped stare." Later they show him out of the hospital and he is talking to people but I recognize the look of feeling completely detached from the world as it spins on. I looked at Nate and said "he has no idea what is going on around him even though he probably fooled everyone in that room!" I still have these moments 10 years later but not as often as I used to!

Thoughts on fall

Views from my childhood home!
     I have always loved fall with the cool, crisp air. I love wearing jeans and hoodies again.  Every year as fall arrives I have the urge to pack my stuff and head to college; the college that my memory has created. You know, the return to seeing and living with all your closest friends. The possibilities that lay ahead! That is the college I long to  return to when the air turns cool and the days get shorter. Ironically, as a teacher post college I dreaded the start of another school year.  The filling out of applications to find a job and the stress of not finding one. I think substitute teaching was my least favorite job ever!! I conefess that sometimes , when the phone rang at 6am every morning, I couldn't even bear to answer it. I couldn't face another day as a substitute!  The teachers I had gotten to know always called me the night before to tell me they had requested me, I didn't mind their classrooms.  I knew the kids, schedule, and school so I always took those calls! It was the fall right before my aneurysm that I kind of sensed God was up to something, though I would have never imagined the story He would write! Totally frustrated, I decided to take a semester off from my Master's program and I took a job at a small newspaper doing their classifieds! What I thought was just a short period of time to refocus, turned out to be a life changing year!
     Our worship leader Sunday, spoke words that I quickly jotted down so I wouldn't forget them.  This is the gist of what he said, "God tells the trees to change and they do immediately, dropping all of their old leaves. When God tells us to change, are we that willing?" So, there I stood all teary eyed and pondering.  I thought back to 2005; the year of change, big change, total and sudden change.  I was not so willing as the trees.  No, I spent everything I had left trying to "prove" I hadn't changed.  I was sure I could convince therapists I didn't have a BRAIN INJURY!! If I had had the energy, I would have fought it kicking and screaming (ok, maybe I tried it a few times but I had NO filter then. Now I just have just a broken one!) Oh, silly tree scared to loose your pretty leaves! Then I started to think about a tree loosing its leaves.  What was left of it was a bare trunk, the core of who it was, exposed against the realities of the coming fierce, cold season.  Those pretty leaves couldn't save it from the reality of winter and would perhaps zap it of all the energy it would need to stay alive, to survive! Drop your leaves you silly tree. They are indeed a part of you. For a season they help to identify you.  But, the core of who you are will survive and when the winter passes, new leaves will form and you will identify yourself with them once more. The new leaves will look much like the old ones but they will never be exactly the same, maybe they will be even thicker the next year, as your trunk grows stronger, and your roots go deeper, through the fiercest season. Let go silly tree, just LET GO! 
There can be beauty in the process of change!
This tree, in my current yard, is a good listener!

Friday, September 26, 2014

Autism quote- because other people just say things better than I can!

My first "real job" out of college was working with an autistic 6th grader. Since my TBI, I have often thought of him and all the lessons he taught me that, at the time I had no idea were lessons I would later really need!  Lessons on how to come up with a strategy to cope with a world that forces you into their fast paced, overstimulating, hard to relate to existence! I would go back and hug that child and tell him how sorry I was, I truly didn't get it. It's not exactly the same but, as I read these words I feel like they could be said for having a brain injury too.................

"Now your mind is a room where twenty radios, all tuned to different stations, are blaring out voices and music. The radios have no off-switches or volume controls, the room you're in has no door or window, and relief will come only when you're too exhausted to stay awake. To make matters worse, another hitherto unrecognized editor has just quit without notice—your editor of the senses. Suddenly sensory input from your environment is flooding in too, unfiltered in quality and overwhelming in quantity. Colors and patterns swim and clamor for your attention. The fabric softener in your sweater smells as strong as air freshener fired up your nostrils. Your comfy jeans are now as scratchy as steel wool. Your vestibular and proprioceptive senses are also out of kilter, so the floor keeps tilting like a ferry in heavy seas, and you're no longer sure where your hands and feet are in relation to the rest of you. You can feel the plates of your skull, plus your facial muscles and your jaw; your head feels trapped inside a motorcycle helmet three sizes too small which may or may not explain why the air conditioner is as deafening as an electric drill, but your father—who's right here in front of you—sounds as if he's speaking to you from a cellphone, on a train going through lots of short tunnels, in fluent Cantonese. You are no longer able to comprehend your mother tongue, or any tongue: from now on, all languages will be foreign languages. Even your sense of time has gone, rendering you unable to distinguish between a minute and an hour, as if you've been entombed in an Emily Dickinson poem about eternity, or locked into a time-bending SF film. Poems and films, however, come to an end, whereas this is your new ongoing reality. Autism is a lifelong condition.
Thanks for sticking to the end, though the real end, for most of us, would involve sedation and being forcibly hospitalized, and what happens next it's better not to speculate. Yet for those people born onto the autistic spectrum, this unedited, unfiltered and scary-as-all-hell reality is home. The functions that genetics bestows on the rest of us—the "editors"—as a birthright, people with autism must spend their lives learning how to simulate. It is an intellectual and emotional task of Herculean, Sisyphean and Titanic proportions, and if the autistic people who undertake it aren't heroes, then I don't know what heroism is, never mind that the heroes have no choice. Sentience itself is not so much a fact to be taken for granted, but a brickby-brick, self-built construct requiring constant maintenance. As if this wasn't a tall enough order, people with autism must survive in an outside world where "special needs" is playground slang for "retarded," where melt-downs and panic attacks are viewed as tantrums, where disability allowance claimants are assumed by many to be welfare scroungers, and where British foreign policy can be described as "autistic" by a French minister. (M. Lellouche
apologized later, explaining that he never dreamed that the adjective could have caused offense. I don't doubt it.)" - The Reason I Jump:
The Inner Voice Of A Thirteen-Year-Old Boy With Autism

Wednesday, September 3, 2014

the lost quote

"I thought that losing Sarah [insert your name here] was the worst thing that could happen”, she has realized, “There’s one thing that is worse and that would be to have never have had her in the first place.” - Jan Phelan (Sarah Burke's mom)

I am nothing if not persistent! Something triggered a memory of a quote I loved from Sarah Burke's mom.  I fixated on it for weeks now, unable to just "let it go!" So, after checking my email accounts, hundreds of blog posts, Facebook account and notes in my cell phone where I usually jot down "words put together in a way I love!" I found it today, 'THE QUOTE' [insert loud asending noise here] that was tucked in the back of my memory! It made me think about memories and how thankful I am to have them still. As I am typing away fast and furious, hubby looks up and risking a meltdown from me for interrupting my train of thought, asks ,"What ya workin' on?" I respond as nicely as I can "a quote", he follows with "oh boy, which one now?" I read it to him as he smirks and says "Wow, that was weeks ago." I'm glad he still has a sense of time!! It made me think of all my therapists trying to help me work through all of the "but I remember [insert anything I was trying to do]." You see, early on I confused a memory of doing something, as proof that I could still do it and just as well and easily as before. I always saw remembering as a blessing! The first time I met with the agency helping me "reenter" life, the specialist assigned to my case had a disability from birth.  The first thing he said to me, was that he had been born with his disability and he never knew any other way of living!  He looked at me and said "but you, you have both the blessing and curse of knowing life as a person without those particular struggles." Oh the tears, he got for saying that, they touched my heart in a special way! I'll still take the memories even if they now create a struggle at times. In the hospital at some point when I began to interact again, I recognized that what I had lived through was pretty incredible, eventhough, I had no capacity to understand people's reaction to reading my medical charts! Honestly, it scared me that people would make such a huge deal about how "lucky I am to even be alive." That is when I first started to realize what a blessing my memories were.  They were little treaures of who I was and what would shape me now!  I was amazed everytime I remembered words for things or a person's name or a childhood recollection. By amazed I mean, cried, every memory a tear that rolled down my cheeck locked away in my heart forever!!!! As much as I couldn't imagine what I lived through, losing memories seemed so much worse, I clung to them for all I was worth. They were the remaining pieces of me! Sometimes, I forget my personality has been altered. For example,  once a people person, I found being around people 24/7 energizing and I hated being alone at all!! Now, to survive, I need hours of alone time every day.   I know Jan Phelan was talking about her physical daughter but I just loved how she said it! Perhaps the language of grief and loss is a univeral language! Now this fragile, introvert must go and try to recover (yup, still crashing) from a late Friday night!

Sunday, August 31, 2014

More anchors............

I heard the song  "Anchor" (click to hear it) in church today!  How fitting since the anchor symbol has been in the forefront of my mind all week! I cannot even count the number of times that my devotions/thoughts/prayers are echoed each Sunday in a new way! It has truly healed some scarred part of my heart! I am eternally thankful for the fulfillment of my longing to simply worship again! As a dear friend says, "Our church is like a hospital, where Grace heals wounded hearts of all kinds!" So, the anchor has and will still hold as I regain pieces of me, I once loved! Here are the words:


I have this hope
As an anchor for my soul
Through every storm
I will hold to You

With endless love
All my fear is swept away
In everything
I will trust in You

There is hope in the promise of the cross
You gave everything to save the world You love
And this hope is an anchor for my soul
Our God will stand

Unchanging One
You who was and is to come
Your promise sure
You will not let go

Your Name is higher
Your Name is greater
All my hope is in You

Your word unfailing
Your promise unshaken
All my hope is in You

Tuesday, August 26, 2014

When it rains it pours, the anchor holds

This post started out as simply "when it rains it pours!"  It was pouring when I started writing and the surgery line in my head ached!!  Summers since my aneurysm have held their own unique challenges! Mostly it is just their tendency to be BUSY! The library, usually the highlight of my week, is transformed into a "zoo" with reading programs and children off from school.  Weekends are twice as busy and required a hour longer shift from me. Despite my plea that it was too busy for me, I had to "suck it up" and go on, taking more frequent breaks whether the work allowed me to or not! Then there was vacations that needed to be covered and a scheduling nightmare for me! It always brought back the feeling of being inadequate and guilt for not being able to help as much as I'd like!  It frustrated me that, even in high school,  I remember working 40 hour weeks during the summer and tolerated it just fine!  Oh, the black cloud of guilt, summer seemed to magnify. Leadership at my current work changed this year and my faint voice was graciously heard.  It has made a tremendous impact to be off the desk where the busy pace was only exaggerating my fatigue and overall brain overload.  But, I loved it and it made me feel like I had a "real job" and was regaining some part of my lost self so I just tried to keep going in my overloaded state; often crashing on the ones who deserved it least when I just couldn't hold it together any longer! The Lord's gracious provision in this area has helped me survive this year's struggles.  It began early  this year as a dear friend lost a child to an aggressive brain cancer. It continued with various extended family members struggling with aggressive cancer, hip replacements, knee replacements and elderly grandparents! Even the littlest things like selling my old, beloved Jeep and deciding how to replace it seemed too much to process. July proved to be a very "off month" for me. I felt constantly behind (even late to things, totally unlike me) and disorganized in the busy, busy, busy!! August came, I braced myself.  As it was in July, August had every weekend packed with activity! Then, the same week my hubby was put on a seemingly impossible project at work, his mom went back into the hospital with an infection in her newly replaced knee.  It had the potential to be very serious! And the storm raged on!! My earthly vessel tossed and my nerves tested!

Now if you know me you know me, I get rather "obsessed" or "fixated" on things now! For awhile, it was clouds and their "silver linings." This summer it is "anchors" as in boat!! Maybe because my hubby teases me that I am his anchor. I think he just means, in a loving way, that I hold him back from doing all the crazy or dangerous things he would like to! I'm okay with that! When we sold my Jeep I asked hubby to drive with me one last time to the sight of my accident when my aneurysm ruptured.  I needed a picture of me with my Jeep right there and then I could move forward! The only phrase in my head was, "the anchor holds." So, like any good Elementary Education major, I dug through my drawers and found an "anchor" T Shirt I bought for an ocean theme party for my nephew a few years ago!  As I thought about the last 9.5 years I thought it could be summed up by this, "the anchor holds."  I even bought an "Alex and Ani" look-a-like bracelet that had an anchor on it. The charm said "strength, refuse to sink." I liked the sentiment, refuse to let life's burdens weigh you down, leaving you unable to move! Then, I googled the words "the anchor holds" because I couldn't remember exactly where they came from.  It was a song arranged by Ray Boltz that I had probably heard often growing up. The lyrics go like this.....

I have journeyed
Through the long, dark night
Out on the open sea
By faith alone
Sight unknown
And yet His eyes were watching me

The anchor holds
Though the ship is battered
The anchor holds
Though the sails are torn
I have fallen on my knees
As I faced the raging seas
The anchor holds
In spite of the storm
I've had visions
I've had dreams
I've even held them in my hand
But I never knew
They would slip right through
Like they were only grains of sand

The anchor holds
Though the ship is battered
The anchor holds
Though the sails are torn
I have fallen on my knees
As I faced the raging seas
The anchor holds
In spite of the storm
I have been young
But I am older now
And there has been beauty
These eyes have seen
But it was in the night
Through the storms of my life
Oh, that's where God proved
His love to me

The anchor holds
Though the ship's been battered
The anchor holds
Though the sails are torn
I have fallen on my knees
As I faced the raging seas
The anchor holds
In spite of the storm
I have fallen on my knees
As I faced the raging seas
The anchor holds
In spite of the storm

So then, in usual "Lisa fashion," I pondered and over pondered , the concept of an anchor and this is what I came up with.  If the anchor doesn't sink deep into the depth of the ocean it does nothing to keep the boat from floating off, far out to sea seemingly lost forever! Perhaps these dark trying times that allow us to see the depth of sorrow are the anchors that hold us from drifting forever out to sea?? That makes "refusing to sink" a worthless motto so I'm going to stick with the gist of the charm and refuse to let the trials of life bring me down! I will, instead, remember Jesus words to his disciples in the raging storm, when they feared their life; And he said to them, "Why are you afraid, you of little faith?"  Then he rose and rebuked the winds and the sea and there was a great calm." We don't have to sink, we have One who has done that for us! Hold on tight little, tossed boat! Have faith!

This weekend I "taught" my nephew how to hold my hands and propel up my legs to flip over!  He watched his sister do it.  I could tell it looked fun to him,  but he still wasn't sure. This is what popped into my head.  Our Heavenly Father may ask us to climb some pretty "steep mountains" as he holds our hands promising not to drop us.  At the top of the climb our lives may do a complete flip but God never lets go and we will eventually land  on our feet again if we don't let go of Him!!.  It may take us some time to readjust from being flipped upside down, and that's okay. My nephew is still unsure about the whole flipping over thing but he humors me so I could get pictures for my blog!
Big sister shows him how it is done!
but it was now or never for a picture!

Yes, I'm still in PJ's

 And, there you have it.  My random, disjointed thoughts and musings!

Thursday, August 7, 2014

3, 474

I asked Siri,  "how many days has it been since February 1, 2005."  'Her' reply:

3,474 days
9 years 6 months, 6 days
496 weeks 2 days
9.51 years

And still every "crash" seems like the worst fatigue/fog I've ever had. Thankfully hubby is good at reminding me this is nothing new!!! It's just so hard to believe a human being can just live in such an exhausted state!! According to my "migraine/fatigue journal "  I keep for my neurologist I haven't had a "good day" since the beginning of May.  The entire summer has been complete "survival mode" with very little thriving, if the truth be told! The weather has not been ideal for this survivor.  It seemed the days are filled with intensely bright, glaring sun while the evenings are one thunderstorm after another.  So, navigating outside is a challenge even with those "granny sunglasses", you know those ones that have blinders on the sides and are enclosed on the top and bottom.  My poor sister is horrified that I own a pair.  K, I promise, I only wear them to drive!!!! Since brewing storms cause an annoying ache right down like line on my forehead where my skull was removed.  It even ached along the valve of my shunt that is a lump on the back of my head.  I traced it with my fingers trying to dull the pain and consequently had a panic attack that it felt different and was coming out of my head! Total panic, shaaking, couldn't breathe, sweaty, the whole deal!! My hubby felt it and it felt completely "normal" to him as he reminded me I was simply overtired and not thinking clearly. So it has been the annoying ache and constant panic reaction from the overstimulating sunlight all summer!!! July this month was especially horrid on me.  While talking to my job coach today, she was shocked and sad that I could fake just "carrying on with life" so well.  Life must go on and I try so hard not to bring everyone down with me! I'm not trying to be "fake" and if you made me stop for a second and tell you how I was really doing, I'd be happy to. "Carrying on" as normal is how I cope, it just has to be done!! It  is what is, there is no fix for Brain Injury and every single brain injury is different!!!.  My doctors explain that my blood tests indicate "normal" levels of needed hormones, but my damaged brain doesn't respond to them exactly as it should! So, I have the choice to live life with these limitations or to become a complete hermit and lessen the number of times I "crash." I simply choose to live within the often annoying limits, rather imperfectly, and deal with the crash when it comes! Today is the first day since the beginning of May that the fog has lifted a bit and I am enjoying a "good brain day," even if it means I will still need a nap after writing this!!! It is truly a gift from God as I have a renewed peace. Goodbye July, August please be kinder to me! Happy summer my friends! May all your days be "good brain days!" and if they aren't send me an email and I'd be happy to commiserate!
My garden is like Christmas in the summer, I forget what I planted until it blooms!! I even went so far as, asking my mom what plants she gave me that we planted together last year! Nope, a bulb I got at a plant sale with my hubby this year!!! What a lovely suprise when I needed a smile!

I unearthed a post looking for another draft..................

Here is my confession for today!  I dread "the struggles" that will come.  I like a safe, happy plan with a happy ending, every time!!! I will only read a book if I am promised it ends happy, without death or separation!! I'll confess I am the one who reads the end of the book before even beginning it, pathetic right?  Sometimes I even speed read right through the climax until things are resolved then I begin reading to understand again.  If you have ever watched a movie with me, I have undoubtedly cried in it.  I probably even cried when nobody else did and I probaly cried for longer than was actually "socially appropriate." It was always so embarassing to me when being the loving, sensitive person that I am couldn't even talk/will my ashamed, embarassed self to not cry to begin with.  Then I would replay the upsetting senerio in my head over and over again, which only led to more crying! Okay, you get the point! Let me tell you that sustaining a brain injury has only aggrivated this embarassing personality flaw.  Now I relate even deeper to the struggles and they remind me of my own! Before my aneurysm, I could at least identify where the emotions were coming from or why it touched me to the point of tears!  Now it may take me days to realize why I reacted so strongly! The Bible tells us there will be struggles and trails of many kinds.  I don't like this! I cringe every single time I read it, I cringe just typing about it! And, now the tears are welling in the corner of my eyes.  I would never want to "relive" those years of trial, ever! But I am glad for the lessons I have taken from them. I am thankful for knowing that no matter what God is soverign, He sees with a heavenly view what we can only see from an earthly one! He is using ALL things for our good and His glory.  But oh the pain, oh the struggle! Some of the dearest people to me right now are in the middle of great struggles.  Of medical diagnosis' that seem bleak, stress from work, families, or the realization that life isn't the plan they had in their head!  I am sad for them, I dread the journey for them. I want them to turn to God and be healed. I wish the road wasn't so hard. But it is, it just is! I love this video about RAIN. Someone gave it to my parents after my aneurysm so that some day I could watch it! So, as I sit here all caught up in sadness for my loved ones I am convicted that this isn't about me. Their journey is theirs, not mine though I am here whenever they need me! So, keep the faith my hurting friends. Cry out to Jesus, Cling to Jesus and live!!!!

Thursday, July 3, 2014

New Chapter and Saying Goodbye.............

Confession: I have waited two weeks before I could even imagine writing this without being completely consumed with tears! To ward off these tears I am currently typing with BOTH hands.  Using my left hand is taking so much concentration I literally I don't have an available brain cell left to cry!! Never mind, here are the tears!!! So here you go.........for yearS (yes, several actually) my hubby has been preparing me for this moment! What moment, you ask??? Why, saying goodbye to my 2000 Jeep Cherokee, of course! Now most people are happy to get a nicer, newer, more reliable, less rusted vehicle that has an Ipod or USB connection instead of a tape deck! Not me, but when have I ever been normal, ever????? Nope, not me! I 'bragged,' I still had a working tape desk (mostly because everyone thought I was ridiculous, and I knew I was. That's why it was fun) I used to play up how "classy" it was with the heated leather (pleather) seats and wood grain panels. I mean, really people, it was a Limited!!! With every roll of the eyes, it only fueled my ridiculous love for this silly vehicle! Let me tell you a little story; two years ago my hubby took me to a car dealership, just to look!  He found a car he liked and the sales guy was pushing hard to get it sold.  Papers were drawn up, prices negotiated then he went to look at our "trade-in." Upon returning he offered more than hubby had expected!  I however, burst into tears and told him I wasn't going to get another vehicle, I just couldn't do it.  The salesman points out that there is a check engine light on.  My tears only intensified as I informed him, I did know and it was just a "minor evap leak!" What hubby also knew was that he saw antifreeze in the oil indicating significant engine trouble in the near future!  I am picturing my beloved Jeep being sold for scrap, crushed and being sent on a barge with all the other "misfits"/junk cars. I was gone, no coming back now. Hubby saw that and knew me and he graciously fed me ice cream and took me home!  I convinced him to let my dad find a used engine and have someone he knew replace it for a good one! Against his better judgement, and out of love for his sensitive, crazy wife the engine was replaced! If it even lasted us 3 more months it would pay for itself (based on estimated car payments) Well, it lasted several more years! Of course, I used to tease my hubby that every time it starts, it is basically paying me!!! Hehehe. So we put what would have been our payment into savings for a nice down payment when it did eventually have to go! Of course, during this time I tried everything to convince my hubby to keep it as a "camp vehicle" or "winter beater." I think I almost had him convinced too, but eventually it did seem more reasonable to sell it while we could since lets face it, we aren't independently wealthy and really, it was time to let go, close a chapter of life and move on with the people in life that stuck with me and are all that truly matter! It served me well when I needed it!  The Lord used it to keep me safe as I drove down that steep bank, half alive, from a ruptured aneurysm.   I was sort of like my first car too because I relearned how to drive in it.  Since, I drove it a few years before the aneurysm it was familiar and therefore easier to drive in.  Driving meant restoration of freedom and "life like before: familiar." At that point I clung to anything familiar.  Familiar was a "life line" and hope for the restoration of some sort of "normalcy" which I so longed for!!!As silly as it sounds it was part of an "interim borrowed identity." I knew I drove a blue, lifted Jeep Cherokee, it didn't matter really but it was something I actually did know about myself.  It was concrete and easily visible and I was too tired for any further self discovery, at that point! Of course, there was that time very early on in recovery that I drove a very short distance to a store all by myself!  Obviously, still unaware I was living in 2005, I asked a store clerk where the blank tapes were, yes, like cassette tape! What I was going to do if I found one, no one will ever know.  But the poor clerk's reaction was priceless as I described a cassette tape because the word 'cassette' was lost!  He graciously told me he thought I was talking about a cassette tape and they hadn't sold them for YEARS.  Very confused I thanked him, after informing him my Jeep still had a player for them and it "wasn't that old". I still didn't totally believe him and still checked all the shelves I could before running out of energy! You just can't make this stuff up!!!!
So, long story short, the "For Sale" sign was placed in the windshield and placed at the end of our road. I cried every time I drove past it in my "new to me" Jeep(of course, it had to be) Wrangler.  There was no interest in it right away, and I have to admit, I was happy! Poor hubby just wanted it out of our driveway so he could stop talking about selling it while I tried to convince him to keep it!! I mean, sure we drove home from Maine with an electric fan that went bad and we couldn't stop for too long or it would start getting too close to overheating. Upon getting home without overheating, we discovered the gas tank at some point lost a strap holding it up and could have easily caused, a less than desirable, outcome! But, again the Lord protected us! When somebody finally (like a few days) was interested in buying it I made hubby go alone to show it!  He was totally honest with all the "used car" issues but miraculously the interested party still wanted it! I had to come out if my hiding spot in the house to hand off a needed paper!  This poor, kind guy introduces himself to me and what do I do????  Yup, BURST into tears.  Hubby had warned him and he just cringed and kept saying he was "sorry," then he told me he would "take good care of it for me!" That poor, kind man just needed a vehicle to get to work in (right around the corner from his house.) He needed it more than me now, so we sold it and I kept the memories!

Our first drives on the beach in OBX...............
Light sensitive "Casper" needs the shade on the beach so she doesn't burst into flames and melt! Jeep doesn't ask questions, Jeep undertands!!!

More beach explorations....

"Mr Fix it" at it again!

That large dent in the bumper where I backed right into the retaining wall of our house (it must have moved that day)

Once I got a little too close to the mailbox (spacial problems?? What spacial problems?? Left side inattention, nah.............)
The time we were at a surprise party and came out to find our window punched out for an old flip cell phone left in the cup holder......oops!!!

Maine to revisit our honeymoon destination.....

Hubby took me to the bank we went over and took some pictures for me
Don't think that anchor shirt wasn't planned "the anchor still holds" (In Christ alone my hope is found) and I drove away with my hubby, a miraclously intact marriage and at least one remaining brain cell! For better or worse, sickness and health!!! It is well.....................................

Bye Jeep, Thank you Jeep!!!

Friday, May 16, 2014

Here's my Broken Hallelujah

As I read, "Hinds' Feet on High Places" by Hannah Hurnard, I feel like it could have easily been written about me. Poor, fearful "Much Afraid" dreading the journey with Sorrow and Suffering! There, I said it, in my "humanness" I absolutely dread it. I have been reminded of the "monuments" of God's goodness in my own miracle story though. Without these "monuments" I would easily be overtaken by the heaviness of my own heart for dear ones in the midst of trials! I am also reminded of God's sovereignty and that none of us, not one, is promised tomorrow!  I am that girl who flips to the end of a book to ensure a happy ending before I am willing to read it! Yup, that's me, pitiful 'Much Afraid' learning to cling to the Shepard trusting Him to give her what is best, always! And, I am also prone to bursting into tears (so I always carry tissues with me wherever I go, just in case.) 

         They are good teachers; indeed, I have few better. As for their names, I will tell them in your own language, and later you will learn what they are called in their own tongue. This,” said He, motioning toward the first of the silent figures, “is named Sorrow. And the other is her twin sister, Suffering."
         Poor Much-Afraid! Her cheeks blanched and she began to tremble from head to foot. She felt so like fainting that she clung to the Shepherd for support. “I can’t go with them,” she gasped. “I can’t! I can’t! O my Lord Shepherd, why do You do this to me? How can I travel in their company? It is more than I can bear. You tell me that the mountain way itself is so steep and difficult that I cannot climb it alone. Then why, oh why, must You make Sorrow and Suffering my companions? Couldn’t you have given Joy and Peace to go with me, to strengthen me and encourage me and help me on the difficult way? I never thought You would do this to me!” And she burst into tears. -Hannah Hurnard Hinds' Feet on High Places

 I have often heard others speak of "survivor guilt" (feeling guilty for being alive while others have passed away.)  As a follower of Christ, I have never felt this way!  The Bible tells me in Psalm 139:16 "your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."  But tonight my human heart almost understands it. It is the closest I've ever come to wrestling with this phenomenon. My struggle quickly shifts to a sense of awe. I still have more work to do, there is no guilt when you believe God created you and continues to borrow you His breath!  God has graciously left me here; me, the quiet, shy, awkward being that I am. Often in the last 9 years I have been so occupied with "using my gift" that it hasn't always seemed like a gift. I never realized it until a wise therapist pointed it out.  Not sure why it took me so long to realize, it is not *my* story, it is God's story and he will use it for my good AND HIS GLORY.  I just need to be willing, and available! Only He can make me able! 

I can not even process the depth of grief felt by my dear friends who just *lost* their little boy!  Three months ago, he was diagnosed with an aggressive brain cancer.  This weekend they lay his earthly body to rest. Cancer did NOT win though. To the believer it never wins. God wins every time. Ben at a very young age asked Jesus into his heart and looks forward to the promise of heaven. Ben is being cared for by his heavenly Father who loves him more dearly than we here in this imperfect life could ever imagine, and trust me he was one loved little boy!! Ben beat us all home, safely home! If you would like to read their story and be encouraged by their faith check out BLUE4BEN. And, please keep this dear, dear family in your prayers!!

PS- if you are reading this from a Google+ post please know that I have absolutely NO idea how to use it yet, I'm still learning!!!! Please send all correspondence to the email address listed below this page, I promise I'm not ignoring you!!

These songs popped into my head yesterday and I had to share.......... 

I wanna be close, close to Your side
So heaven is real and death is a lie
I wanna hear voices of angels above
Singing as one

Hallelujah, holy, holy
God Almighty, the great I am
Who is worthy, none beside Thee
God Almighty, the great I am...........


Even though I don't know what Your plan is
I know You make beauty from these ashes

I've seen joy and I've seen pain
And on my knees I call Your name
Here's my broken Hallelujah
With nothing left to hold onto
I raise these empty hands to You
Here's my broken
Here's my broken Hallelujah
Hallelujah, Hallelujah, Hallelujah......................

Sunday, May 4, 2014

'Spoon Theory' by Christine Miserandino

Because I can't explain it any better, I give you "The Spoon Theory".....(*just substitute Lupus for Traumatic Brain Injury, in my case) Here is what it feels like to live with chronic illness or disability. Just click on the link below(I don't have permission to reprint it for you so I will honor the request of the author) .......................
click here------>THE SPOON THEORY

Friday, February 21, 2014

right next to hay!

So I confess, I dislike "fund raising" almost as much as I dislike throwing hay (and if you know me, you know I GREATLY dislike it!) The Brain Injury Association of NYS is having a walk to raise awareness and funds on behalf of all of those with brain injury!! I really wanted to go and support the cause but found myself on the schedule to work at the library that day.  It was easier to quickly dismiss it and stick to the original plan! I hate fund raising and figuring out a schedule and finding a sub was just too overwhelming to me. I admit, I was going to just "play it safe." Then, my phone rang.  A dear friend and fellow survivor quickly made me change my mind.  So, I took a few deep breaths and tried to form a plan to get to the walk! My wonderful hubby agreed to drive me there and walk with me. A gracious co worker just took my shift, so no switching was involved! And, now we have registered and the fund raising has begun.  I admit, it makes me rather uncomfortable but it is for a great cause and I am honored to be able to walk across a bridge over the Hudson River with fellow survivors who each have their own amazing story!  Most of them, like me, relearned how to walk again through many pain-staking hours of therapy and sheer determination!Of course, then there is my dear friend, A! She is amazing and a dear, dear kindred spirit.  She inspires me and pushes me out of my small comfort zone while still allowing me the freedom to live within my limits! Her book was just released, click here for her story or grab a copy of her book!
If you are able and interested in donating to the cause go to the BIANYS website click on donate and be sure to include our names in the form. We are "registered walkers." Thank a million for all the ongoing love and support!

In other news, please keep the nephew of my college roommate in your prayers, please! Ben, is 4 years old dealing with a large brain tumor that is said to be "very aggressive." He begins radiation and chemotherapy Monday! Please join thousands of others as we pray for a miracle!!! You can follow his journey on a website his amazing mother has created: Pray for Ben: a little boy waiting on a miracle. PS- Ben is always the one wearing blue since he is an identical twin, it is easy to recognize him!  Here I am,  decked out in blue to show support the day he had his brain surgery! I am so thankful I serve a God who is not bound by textbooks and statistics! Thanks for the prayers folks!

Saturday, February 1, 2014

Day 3,287

February 1 is the day that will forevermore be a part of our story! Maybe even part of yours too as you witnessed nothing short of a miracle!  Each year, I am thankful for all the sweet and wonderful moments here on earth I got to be a part of amongst the exhaustion, fatigue and struggle! I must admit, I never pictured this life 3,286 days ago! If I'm honest this would have been one of my greatest fears: a medical anomaly, a brain injury, being/feeling slow, seeing life like a fly on the wall because I simply can't process it fast enough, struggling to sequence things and remember names (my one strength) AND working part time in a library, are you kidding me??? This is not what my fancy private school degree was supposed to get me, was it??

Nine  years, it is well!!

I could dwell on all the loss (and there sure is a lot) but today I remember and focus on what wasn't lost! I may be a mere shadow of my former self but I'm still loved by my husband, family and friends, and even new coworkers, just the way I am, no matter how neurotic that may be (because if I don't have a strategy for completing a task, I will sure create one!) Many survivors can't say this!  My story is the exact one God created me for! And, you know what, I actually use that fancy degree I have, every day to develop those strategies for daily life!

Nine years ago, I would have never thought simply making sugar cookies at Christmas would burn me out! Here's that story I meant to write (I took all the pictures) but then felt so burned out I never did get around to blogging! The story goes like this..........Christmas was always a time of year we loved! Since my aneurysm, I just dread it, the whole season! The busy stores the busy, busy, busy!!! So this year, I thought I'd give my hubby the gift of 'Christmas Cheer'.  So I tried my hardest even making his favorite, sugar cookies, from scratch! For years now, I just bought those ones in a tube that you cut off and bake. I couldn't even be bothered with the tub of dough that meant trying to get even amounts onto a spoon and then scraped off. Yup,  if I baked it,I called it "homemade".  Of course, they just don't taste the same if you are a "Christmas  Cookie Connoisseur" like my hubby!!  And then there is the issue of frosting, let's not even go there!!! This year the cookies would be "real ones" and surely I could handle that now.  I found and printed the easiest recipe I could find that was reported to also taste good by others!  I then broke it down by numbering the steps and highlighting them in different colors, (can you say neurotic??)

The dough was successfully made and chilled for an hour or two while I rested.  Then came the rolling it out to use a cookie cutter making  fun shapes like "real" Christmas cookies! The only cookie cutters I had were large ones so I went with the festive moose!
I give up!
Needless to say, the moose shape was a hard one to retain as my tired left hand started to curl on me, as it still does!!! It was more "blob" and less moose(bottom left was a moose, I swear)!!!
Totally frustrated and utterly exhausted I gave up, tears running down my face because I failed at even making Christmas cookies! I didn't have anything else to cut out shapes and I was determined they had to be a shape!  My hubby told me to just cut out circles using the rim of a glass......brilliant!! I'll call them ornaments, so circles/ornaments it was, but not without one last failed moose attempt!!!!!!!!!!! yeah, my brain was stuck on making them all pretty, it is hard to derail a fixated TBI survivor!
I think the moose here is in two parts here on the bottom middle.

So, there you have it, nine years ago I could not have imagined what I just admitted to you! And to be quite honest, I am still learning and still confessing pride. Pride that wants to "just be back to normal" or pride that refuses to say "I'm sorry, I can't." Having worked at my wonderful library job since 2007 and on the crazy busy circulation desk since 2008 trying to keep way too many things straight (yes, I use index cards with things I need to remember, like the basic checkout periods, phone extensions etc. and post-it notes to remember names for retrieving books, (even an alphabet strip briefly until I could do it in my head). It took me until this year, before I finally had the courage to admit that the desk may not be the best place for me, even though, I really do love it there! I finally had the courage to admit that I am fried and left empty for days after a shift (especially on a busy weekend).  I finally had the courage to ask if there were other quiet projects I could work on off the desk, but near enough to bail them out in a pinch.  And, you know what?? My gracious supervisor found me some projects to do off the desk.  It's not that I can't do it, but it is certainly still a struggle even after relearning things like,shifting a task to answer a telephone. The neurological symptoms of a brain that is constantly flooded is beginning to take a toll on my frail nerves! Yes, even involving an ER trip for a stroke evaluation.  Thankfully no stoke just a brain telling me it is overwhelmed and unable to handle busy, busy days!!!So, I swallowed my pride and asked which is PROGRESS in baby steps!!!

As I look back to how I would have viewed life, nine long years ago maybe the view isn't as pretty as I have made it out to be in the face of great loss.  If I were really honest with you I would marvel, as one therapist did, at my level of commitment to a major and career I didn't love! I would admit to you that it was "safe", being a teacher with tenure, great insurance, nice pension, unbeatable schedule and something I was good at, impacting the lives of others for good! But, if I were truly honest with you, you would see the struggle, the dread of another week 'stuck' in a classroom (I much preferred the smaller special education classes).  I actually loved my first "real job" in a classroom with an autistic child!! If I had let go of the "safe" back then I might have learned sign language and been an interpreter or teacher in that community, what held me back?? FEAR!  I had to get my Master's finished and get my classroom experience so I could keep my permanent certification for classroom teaching , you know, just in case!!! Then, with that "safety blanket" I could pursue what I really wanted to do!! Silly, silly, silly me.  I remember a great struggle right before my aneurysm, with this! I actually took a job at a newspaper to explore other options for a career. I could not take one more day of being a substitute teacher even if I was getting my "classroom credit" while getting my Master's degree as a Literacy Specialist (because that is what my principal friends told me I should do!)  It was on the way to this newspaper job that my aneurysm burst, changing the course of my life forever! Before this day,  I felt a great wrestling in my soul about not being in the place God had for me! And, let me tell you, I did not have peace.  Nine years later, while it makes me sad that I have new and unreasonable limits (in my own head), and the journey has not been an easy one (I still have some Post Traumatic Stress to deal with!!) But,  I can honestly say I have peace. Peace that my story is, 'being a Brain Aneurysm Survivor who lives to tell about it.'  A Brain Aneurysm Survivor living and dealing with a Traumatic Brain Injury.  I have more peace now without the tenure, insurance and pension in the plan than I ever did before.  Do these things still concern me? They sure do, but teaching is no longer an option for me!  My story had to be this one, not my own "safe" created one! And, you know what, I live now without a daily headache too (though I still get the occasional migraine aura) and I no longer dread going back to work at the end of every weekend!  I've met some amazing people and have been blessed by a loving, faithful husband!  I have family and friends who encourage me and understand when I, "just can't" do all the things I would like to do! And, that "private college degree" I'm not using, but really use every single day, yeah that one, has also given me some of the dearest and best friends a person could ever have.  The college experience is now a fond memory in my broken mind.  It was a solid foundation for which to build the life God had for me.  It's structure is much stronger that my "safe life plan".  God is good!  Thanks for reading this and being a part of my story!