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!