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!"

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 day......my phone.....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!

OOps

thankfully, married "Mr Fix-it"

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

But seriously, this is the house I come home too.....life 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 there........my 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!

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!

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!!

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 confess 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!

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
by NAOKI HIGASHIDA