Monday, November 26, 2012

Yet another quote!!!

this quote sooths my often anxious soul.................................
Every experience God gives us, every person he puts in our lives, is the perfect preparation for the future that only he can see. -Corrie ten Boom

Monday, October 22, 2012

Another quote........

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”
Haruki Murakami
 
 
 

Saturday, October 20, 2012

Reminiscing....................

   "It was the best of times, it was the worst of times."

 I can't believe that it has been 10 years since I graduated from college with my Elementary Education degree in hand, ready to "save the world", or at least a few kids, anyway! A few weeks ago I 'dragged' my wonderful husband back to my tiny, rural Alma Mater to reunite with old friends! I of course was obsessed over every detail as I do now when something is unfamiliar to me.  Everyone kept telling me it was "no big deal, just old friends hanging out".  I appreciate their love for me in trying to calm my obsessive ways but I still obsessed! After packing every last thing I "might need", seriously, if you think I am kidding you have never visited Western New York.  It could easily go from warm and sunny to snowing in minutes and let's just say, it is 45 minutes to any civilization where you might have a chance of "picking up" whatever it is you forgot! Now please remember, if I get too cold my left side still becomes spastic and it is uncomfortable to have your muscles all cramped up for any length of time, so I like to avoid it when I can! With that being said, I was pretty exhausted from the packing alone! My husband, on the other hand, simply throws a few things in a bag and is ready to go!  I love that, if only I could do that and not obsess, make detailed lists and devise a "just in case plan"so I am not having to make a quick decision or forced to "rush" (neither are things I am capable of anymore). 
    So, with packing behind me we left on my "mecca" back to college! Now you should know that when you go to a private college in the "middle-of-nowhere", the local truck stop becomes a popular 'hangout'!  I'm not kidding! So, I make this big deal about the truck stop, we are about to come to, I sarcastically prep my husband for the excitement by turning on the drama as best I can(poor man).  Long story short......the truck stop has closed down, rats, now my story is so much less believable.  Never-the-less, we venture to college.  As we are almost there my hubby says, "man, this place really is in the middle of nowhere", Ya think????? As we pull into campus I was filled with so many conflicting emotions! I knew I would be but until you are just there, in the moment, there is no way to fully prepare!
    As I walked into the "Campus Center" it was all redone but still smelled the same, just a distinct smell, not good or bad! But, then the flood of emotion mixed in the the confusion of an unfamiliar setting!  There I stood for a moment, taking it all in.  There are so many good feelings and happy memories of this place that they almost choked out the unpleasant ones.  But, you can't help but remember the late nights and tall cups of coffee, giving you that nauseous feeling! I am still trying to repress most of my freshman year of poor time management, less than ideal relationships and poor judgement in general! Just to clarify, not the usual poor judgment things freshman with 'new found freedom' do. No, I am talking about "going to class in your PJ pants with a hat on your head" kinds of things you hope you are NOT remembered for!! I know I should be more forgiving of my 18 year old self, but seriously, I have no idea how to "not be" too hard on myself.  That was also the year my horrid migraines started, I think I had one, never-ending, migraine until my aneurysm ruptured but there apparently is no connection.  I'm not going to lie, it was really hard to function with a headache of varying degrees of severity! If only all my weird insecurities could be blamed on it!
      So, while the "before Aneurysm Lisa" would have been all about spending every second chatting with people, the "after aneurysm Lisa" escaped with her husband to Letchworth State Park for an afternoon of beautiful leaves and quiet spaces AND A CAMERA! I only took a few hundred pictures.  I am SO thankful for digital cameras!!!Then it was back to Campus for for a reunion dinner!

"Not one that I have found in all my searching equaled the one that found me when I finally stopped." -Tyler Knott Gregson
                                             Here are some photos for you..............
 
 
 




  

 
 HAVE A WONDERFUL WEEKEND!

Saturday, September 29, 2012

THE ACCEPTANCE JOURNEY continues

I saw my neurology PA on Monday!  I "talked" my dad into coming with me so I could keep things straight and remember what they told me.  They confirmed that scans all look good (they let me physically read the reports for myself, I must have a 'red flag' in my file, I didn't even have to neurotically ask). No concerns stemming from the aneurysm, that is a relief to hear, again.  The general consensus is.....migraine (aura came Friday night) caused numb face and hand is unrelated with an irritated median nerve from the curled stroke hand all the time.  I am now wearing a wrist guard 24/7 to keep the left side from curling because realistically, I can't think about keeping it uncurled ALL the time, I still have to live life, cook dinner, do laundry, grocery shop, the usual things that take incredible brainpower now!!

I must say in the ER I was more overloaded than I have been in years.  I literally could not focus long enough to follow a finger with my eyes! So glad Nate was there with me! Although, amazingly, the neurologist seeing me picked up on it right away as she asks, "are you having trouble concentrating?" This week I decided I was going to limit my daily activities and not "push through" each day doing 'WAY TOO MUCH'.  A couple days earlier this week, I didn't even have the strength or energy to get out of bed so, I just stayed there! I was SO wiped out I was not convinced my involuntary muscles would even keep going (you know like your heart pumping blood, your lungs breathing in air).  I haven't crashed that hard in awhile!  I guess three, four hour mornings in one week at work is still way too much for this injured brain.  Lesson learned. Please remind me if I forget or try to push it again!  My brain DOES NOT 'just bounce back' (this is confirmed by renown neuro-psychologist, I didn't just make it up).  That being said, I had to miss out on a family gathering for my cousin's 18th birthday (Happy 18th Birthday M), I hate missing things I would love to be at but I am learning: NEW LIMITS WITH ACCEPTANCE AND JOY!


Just because this picture makes me smile!!  -Author of Picture Unknown

Friday, September 21, 2012

Yes, yes I am a neuro nightmare!!



Here is the deal, for those who have heard pieces of it....perhaps David Bowie says it best :"I don't know where I'm going from here, but I promise it won't be boring!"

All week I have had numbness/tingling in the tips of my left fingers. I tried to brush it off, ignore it, and 'chalk it off' to doing too much! When I was at work yesterday morning, it (numbness and tingling) slowly move up to my face. This made me very concerned! My poor sister had been telling me for days to get it checked out in the ER because of my medical history. It seemed like a very exhausting, overwhelming thing to go through again and I didn't have a headache, so I kept hoping it would just go away! Long story short, I called my AMAZING neurosurgery team and they advised I get it checked for possible stroke/ TIA. I don't argue with them, I just go! Forbidden to drive myself there, a gracious friend packed up her napping infant and picked me up. I felt good about a nurse and good friend taking me to the ER! We met Nate at the ER entrance, who of course was sick to his stomach by the whole "ordeal". It was a good thing he was there because then the questions started to fly. I was overloaded and missed a nap after my morning at work. Nate got me checked in and pointed in the right direction, "my neurosurgery team" had made me special 'reservations' so, doctors began asking me questions as the nurses are trying to put an IV in my tiny veins and sticking heart and oxygen monitors on me....TOTAL UTTER OVERLOAD! Then, the neurology team on call, asked me the date: my answer included a 19......oops that is my birthday year. Okay, not 2002, don't make that mistake again. I finally got it! It was really funny when Nate told the resident neurology doctor about my shunt she got all excited and asked if she could "see it"!  So I parted my hair and she felt all around it! Then I showed her the scar on m belly where it drained to!  She was amazed at how well it had healed so I told her about my "Arbonne Rejuvenating Cream" that really helped heal it!! I just thought it was hysterical how excited she got over a shunt!!!! 

Again, POOR Nate! We are in the same 'room' as when they brought me in back in 2005 and told him to say "goodbye". After an EKG, blood tests, urine tests, a CAT scan and then one with contrast, a million more questions, I was clear! Doctors ruled out stroke or TIA! The conclusion is: either a migraine without headache or pinched/irritated nerve. My amazing parents immediately made the two hour trip up and my sister was set to go too. Yes, I am one loved girl. I am so glad it turned out OK.

My neurosurgery team called me today! When I answered the phone I heard my favorite PA say, "Dr and I have been talking about you for the last hour" (I have no doubts that was 100% true) They both felt confident, by the scans they got from last night, that my symptoms have nothing to do with the vascular/aneurysm/stroke problems of 2005. But, the PA reminded me "Lisa, your case is very complicated so we will follow up on you. We are confident with whatever neurology wants to pursue" I will follow up with neurology on Monday as there is no real answer as of yet! Thanks for all your prayers for me. I am confident God is still working out some/LOTS of my own weaknesses! The above song was going through my head as I laid in the quiet CAT scan machine, just thought I'd share!!

"Never Let You Go"
When you're awake and you can't believe your eyes
Cause all the truth that you knew has turned to lies
When you're scared and you can't see past a day
Remember who holds tomorrow
Know his love will light your way

Hold on when everything is shaking
Stand strong when the ground is falling through
Reach out to my hand in the darkness
That's holding you

I'll be your peace in the waiting
Your strength when you're broken on the floor
Hold on, it's all worth fighting for
Cause I will never let you go
I will never let you go

When you look in the mirror and you run away
Cause all you see are the scars from yesterday
When the parade goes by and you feel alone
Never lose hope to sorrow
You're closer than you know

Hold on when everything is shaking
Stand strong when the ground is falling through
Reach out to my hand in the darkness
That's holding you

I'll be your peace in the waiting
Your strength when you're broken on the floor
Hold on it's all worth fighting for
Cause I will never let you go
I will never let you go

When the road is hard and your faith is shaken
Never look back on the steps you're taking
You're more to me than you could ever know

Hold on when everything is shaking
Stand strong when the ground is falling through
Reach out to my hand in the darkness
I'm holding you

I'll be your peace in the waiting
Your strength when you're broken on the floor
Hold on it's all worth fighting for
Cause I will never let you go...
I will never let you go
I will never let you go...

You're more to me than you could ever know.

Tuesday, September 11, 2012

Plumb- Need You Now



"Well, everybody's got a story to tell
And everybody's got a wound to be healed
I want to believe there's beauty here
So, I guess you're tired of holding on
I can't let go, I can't move on
I want to believe there's meaning here

Chorus:
How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

Standing on a road I didn't plan
Wondering how I got to where I am
I'm trying to hear that still small voice
I'm trying to hear above the noise

Chorus

Oh I walk, Oh I walk through the shadows
And I, I am so afraid
Please stay, please stay right beside me
With every single step I take

How many times have you heard me cry out?
And how many times have you given me strength?

Chorus

I need you now
I need you now"

Tuesday, September 4, 2012

September

September is Brain Aneurysm Awareness month! If you know me I'm sure you are very "aware"! According to the Brain Aneurysm Foundation here are the warning signs:
Image created by the incredible, Lauren Melnick-Lamb (click on her name to see what she is up to!)

"Understanding : Warning Signs/ Symptoms

Unruptured brain aneurysms are typically completely asymptomatic. These aneurysms are typically small in size, usually less than one half inch in diameter. However, large unruptured aneurysms can occasionally press on the brain or the nerves stemming out of the brain and may result in various neurological symptoms. Any individual experiencing some or all of the following symptoms, regardless of age, should undergo immediate and careful evaluation by a physician.
  • Localized Headache
  • Dilated pupils
  • Blurred or double vision
  • Pain above and behind eye
  • Weakness and numbness
  • Difficulty speaking
Ruptured brain aneurysms usually result in a subarachnoid hemorrhage (SAH), which is defined as bleeding into the subarachnoid space. When blood escapes into the space around the brain, it can cause sudden symptoms.
Seek Medical Attention Immediately If You Are Experiencing Some Or All Of These Symptoms:
  • Sudden severe headache, the worst headache of your life
  • Loss of consciousness
  • Nausea/Vomiting
  • Stiff Neck
  • Sudden blurred or double vision
  • Sudden pain above/behind the eye or difficulty seeing
  • Sudden change in mental status/awareness
  • Sudden trouble walking or dizziness
  • Sudden weakness and numbness
  • Sensitivity to light (photophobia)
  • Seizure
  • Drooping eyelid"

Here is my recovery story again!

BUT, you don't have to take my word for it! Check out Maria's story

Happy September!
Image also created by Lauren!!!!
 

Thursday, August 30, 2012

*Deep Breath*

Today(now yesterday) started out more promising than earlier this week.  It was cool out this morning and cloudy!! Just the way I like it! I am still really, really crashing from two weeks of nonstop busy! I think from now on, if I am feeling like I am "being asked too much" I should just say 'no' to whatever it is! 
I had to be at a doctor appointment at 3 pm, I left EXTRA early so I could drop off extra tomatoes to my neighbor! Of course, the second I left my house......OUT CAME THE SUN! *deep breaths* On the way there, I ran into stopped traffic......miles and miles of sitting cars!  Now, there is glare off every windshield for miles! I try to keep my eyes on the road! After awhile, I decided to be nice to the Jeep and turn the AC off since we weren't moving.  Now, there I was sitting, sweating, avoiding sun glare, and overloaded by all the commotion around me! I was just thankful I decided to wear the more "toxic" deodorant instead of the all natural, but less effective stuff!!!! Thankfully, when I did look up I saw the vehicle right next to me was an ambulance and that made me feel a little better, you know, just in case you should need one (neurotic right??- that these thoughts go through my broken mind)By this time, I am now almost late to my appointment instead of arriving insanely early and sitting in the waiting room reading to unwind before my appointment because I knew I had a million questions for the poor doctor!
I did make it to my appointment but was visibly "frazzled" as I had no idea if my insurance had changed or what my address is! *deep breaths* No wonder everyone in every office knows me by name!! Sometimes, it gives me a complex though, I must admit!

Tuesday, August 28, 2012

Storms!

Tomorrow marks 7 years since my third aneurysm/bypass surgery!  It was a day, shared with many hit and devastated by hurricane Katrina.  The whole day just seems so surreal to me still!!  My surgery was so risky there was a real possibility I would not wake up from it. The memories are still raw and oh, so real.  They are still too painful to write about tonight! It probably doesn't help that I am exhausted from two weeks packed with nonstop busy days, that always makes me feel more 'unstable'. 


a photo of Hurricane Isaac from the Weather Channel

SHE STOOD IN THE STORM, AND WHEN THE WIND DID NOT BLOW HER WAY-AND IT SURELY HAS NOT- SHE ADJUSTED HER SAILS" [Elizabeth Edwards]



Wednesday, August 22, 2012

FUNNY QUOTE

"I have just discovered what is wrong with my brain: On the left side, there is nothing right and on the right side, there is nothing left" (this is funny because my aneurysm burst in the right side so there probably truly isn't much left)

THE WINDOW FROM WHICH WE LOOK!

I love this email so much from my Aunt M I had to post it:
----------------The Window from which we look----------





"A young couple moves into a new neighborhood.
The next morning while they are eating breakfast,

The young woman sees her neighbor hanging the
Wash outside.
"That laundry is not very clean", she said.
"She doesn't know how to wash correctly.
Perhaps she needs better laundry soap."

Her husband looked on, but remained silent.
Every time her neighbor would hang her wash to dry,
The young woman would make the same comments.

About one month later, the woman was surprised to see a
Nice clean wash on the line and said to her husband:

"Look, she has learned how to wash correctly.
I wonder who taught her this."

The husband said, "I got up early this morning and
Cleaned our windows."

And so it is with life. What we see when watching others
Depends on the purity of the window through which we look!
This is a good one. "

Wednesday, August 15, 2012

Wisdom...........



“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think........But the most important thing is, even if we're apart... I'll always be with you." -Christopher Robin to Pooh

Sunday, August 12, 2012

OLYMPIC THOUGHTS

So, here is why I like the Olympics. This year,it is mostly the footage from London, my favorite city! I don't know why but I am just obsessed with all things London (or British really). Perhaps, it is my English roots from hundreds of years ago, or the cool, rainy, perfect weather. Those are the best explanations I can come up with. Yes, in college I was fortunate enough to take an 'art credit' there for 3 weeks! Now, I want to go back to do all the things I didn't get do the first time :-) With that being said, I am enamored by athletes. Probably because I have NO athletic ability, nope absolutely NONE. So, I amazed by the capability of the human body! Even the para Olympics far exceed my capabilities; and I have all my original limbs (even if only half of them work properly)! I began thinking, "what would 'Brain Injury Olympics' look like?" I started this commentary in my head explain why everything is such a struggle, calling for endurance, persistence and sheer will to succeed (I have since forgotten the elaborate commentary about how every single thing in daily life now has to be carefully planned, like walking down stairs, it is now possible to forget you are walking down stairs and end up in a frustrated heap when you loose your balance and miss a step. Even if I could remember the commentary I created, I wouldn't have the energy to type it out!)  The headlines would read "EVERY DAY THINGS ARE NOW OLYMPIC EVENTS!"  Okay, allow me to diverge a moment, this is what triggered my thoughts: I was going to make a nice lasagna dinner tonight since my hubby has been out of town.  On Pinterest I found a "very easy" French bread recipe.  For most human beings it probably is but by the time I got done mixing and measuring and kneading and, and, and....... my brain was so fried that I might have bread, but I am so fried that making the rest of dinner to go with it.....NOT GOING TO HAPPEN.............too many steps!

Even, going to BJs this week also proved to be an "Olympic sized" event! It finally rained here giving my poor sensitive eyes relief from driving in the blazing sun! Driving in rain, however, adds to the sensory overload with the wipers and 'water whiteouts' caused by huge passing trucks! Still, I just love the rainy weather! So, I needed to stock up at BJs so this was the day I chose!  I slipped on my flip flops because if I wore anything more sturdy, my feet would be soaked all day and I knew it was more than I could tolerate! Flip flops it was, I will deal with the consequences later! I get to BJs and it is absolutely POURING, generally I don't bother with an umbrella, but again, I didn't want to be soaking wet ALL day.  Of course, BJs is renovating and reorganizing so I wander the HUGE store aimlessly with everyone else stopping to read signs and find what they want.  I survived this and was leaving with a cart that probably easily outweighed me.  I put up my umbrella and struggled with pushing the cart with just my right arm!  Of course, this fatigue caused my left arm to become tight, my hand curling in awkward positions and my umbrella  now out in front of me, instead of over my head like an umbrella should be.  I could not manage keeping the umbrella over my head while pushing the cart! Half way to where I thought I parked, I threw the umbrella in the cart and decided to just get soaked! At this point,I also realized I had no real idea where I actually parked!  Great!  I stopped, grabbed my umbrella and decide to regroup without also navigating the huge, heavy cart!  I knew I parked in some aisle in the very last spot!  I spot my Jeep; sweet relief! By now my left hand was so tight around the umbrella I didn't even feel like prying it off so I grabbed the cart with my other hand!  My umbrella now out in front of me, again, and at this point I realize the cart is too wide to fit through parked cars to get to my Jeep in the next aisle! My only choice was to return to the front of the store and try again, but oh wait, there in the handicap section, is a opening large enough for the cart.  Using my entire body as a counterweight I try to make the turn! I plea the 5th about hitting (nudging) things as I turned! Of course, now my flip flops are very wet and very slippery too! Very, very slippery, my little toes are curled in an effort to keep them on my feet!! This caused my left leg to be spastic now too.  So here is the picture, small girl, huge cart, umbrella in front held by a strange curling hand, curled toes and slippery flip flops now attached to spastic left leg.  *DEEP BREATHS*  I made it to my Jeep, loaded it up, skipped trying to return the cart to the proper place, climbed in completely exhausted, put the seat back and closed my eyes.  After some rest, I ate the snack I packed for myself hoping it would revive some brain cells!! After an undisclosed amount of time (I lost track) I was okay to get home.  I made it home where I promptly took a nap then got up and sipped on tea, dreaming I was really in London :-)  Perhaps in the future I will completely skip the umbrella or at the very least find one that would make me less of a spectacle  (if that is even possible.)


Maybe time to find an umbrella without the usual "Lisa flare!" Oh, why be normal??

Saturday, August 4, 2012

Post rant ;-)

Today, I had to take my turn today working on a Saturday!  When I got to work, and checked my mail box I found a very sincere, kind apology note.  So, it is 'water under the bridge.' I debated deleting my "rant" post but some day I may want to look back at it, so I am leaving it :-) I hope this will just serve as another growing experience! This is what life is all about, right? So, instead of deleting this from my "memory", I choose to keep it and learn how to better relate to people in general; what a journey it is for anyone!!! Have a great weekend my friends!

the very symbol of 'new growth' at it's best (yes, I'm still obsessed with this tree)

Thursday, August 2, 2012

just ranting.............

Here is my "survivor rant" for the day! I find it very, very hard to tolerate the insignificant, petty things that people make into such a big deal!!! Perhaps, it is a job hazard of "working" in a library after living through 3 BRAIN SURGERIES AND  2 RUPTURED ANEURYSMS!!! I know it would NEVER be appropriate to yell "IT'S NOT BRAIN SURGERY PEOPLE", so of course I quietly try to ignore it (even though I know I will fixate on it for awhile).  Generally, I LOVE "working" at a library because of that same reason, at the end of the day, it really is "just a book" and any mistakes can usually be easily corrected without many bad consequences to others!!!! Of course, I recognize this happens everywhere in life! People just have to add drama to everything! And yes, sometimes small insignificant things bother me too, I'm not perfect! I am just saying that after surviving what I have and living every day with it's struggle, I'm just trying to do my best. I really don't think it matters if I reused your "staff pick" paper, really?? Is that all 'you' have to worry about, REALLY!!!!  Did 'you' really just snap at me over something this silly!  If I had known it bothered 'you' that much, I would have never reused it. In the future, I will just find a new piece of my own!!! So, after trying my hardest to hold it together, I failed and a meltdown took place.  I was tired after a 4 hour shift the tears just started to flow,( I still have no control of emotions when overly fatigued)!!  My very first ever meltdown at the library (amazing, really).  At the very least, I would expect to be told about it in a quiet, kind, gentle way; not right at the circulation desk for all to see and hear, and I don't even have a filter left on my brain! I am thankful for a wonderful and supportive supervisor and a great job coach to help me with the "angry librarian"!! I'm sure by the next time I "work" it will be "water under the bridge"; for me at least! *deep breath*  I have to consider the source (as my wise mother advised me) when thinking about this.  All that came to my mind, was that miserable Principal in Anne of Green Gables, Katherine Brooke; Yup, that should explain it all!!  Might I also add, that this is why I always loved teaching special education.  If find it much easier to understand these rude, socially inappropriate actions with people who either genuinely don't know better or truly can't help it. I have been kicked, bitten and even had things thrown at me without resorting to a puddle of tears, not to mention months in Neuro ICU with frontal lobe damage patients, I'm just saying!!  And, I 'secretly' love that when I tell my hubby about my day (hours later and still crying as I talk) he is ready to storm into the library and defend me, no questions asked!! Okay, thanks for letting me vent, I feel better now!! ;-)

Friday, July 27, 2012

Dear summer,

Dear summer,
  You have officially worn me out with the constant busy, busy, busy! From now on "NO, is a complete sentence." But,  just when I feel like staying in bed and turning off all electronic devices that connect me to the rest of the world, a friend sent me an article about an Irish Olympian overcoming SEVERAL serious "set backs" in life. With stubborn persistence he carried on  and will be competing in London (my favorite city) this summer.  His name, Kieran Behan (just click on his name for the story) but his story touches my heart and has shamed me out of my, "poor me" attitude that creeps in sometimes from being just so tired all the time!! So, now I will have a struggle between my American pride and my "brain injury" connection.  Sorry America, I'm routing for a fellow survivor even though in my book, he has already won!!!!!

Tuesday, July 24, 2012

Steve Saint quotes "The Thorn"



The Thorn by Martha Snell Nicholson


I stood a mendicant of God before His royal throne
And begged him for one priceless gift, which I could call my own.
I took the gift from out His hand, but as I would depart
I cried, “But Lord this is a thorn and it has pierced my heart.
This is a strange, a hurtful gift, which Thou hast given me.”
He said, “My child, I give good gifts and gave My best to thee.”
I took it home and though at first the cruel thorn hurt sore,
As long years passed I learned at last to love it more and more.
I learned He never gives a thorn without this added grace,
He takes the thorn to pin aside the veil which hides His face.

I love Steve Saint's words toward the end, "I haven't sought, because I didn't know it existed"

Sunday, July 22, 2012

Thoughts about a tree.............

Especially for my "survivor" friends (of all kinds; you know who you are ). And, for those who help me stand every single day!!!!!!!!!!!!!!!

A few weeks ago (yes, I am still recovering) my mom, my sister and I went to NYC to celebrate my sister's 30th (birthday), which was in February but she didn't want to walk around NY in the freezing cold, so we waited until what was supposed to be spring.   But, busy schedules turned into July.  So, we went, and it turned out to be a "perfect summer weekend", not too hot, cloudy and a cool breeze.  We had such a blast seeing the sights and being together , just us girls!  This is rare these days! K's iPhone app got us to the right subway, then off several times (oh how I longed for the Tube in London though), there was lunch at Cafe LaLo, we hailed a taxi (my first taxi ride) and navigated through FAO Schwartz (no small feat for the brain injured especially with flashing lights, talking toys, escalators and lots and lots of people in crowded aisles) My mom and I had never been to the 9/11 Memorial. So, that was our last stop before dinner in the meat packing district (a whole other story, a story in which I wish I never did read, The Jungle by Upton Sinclair, hehehe)!! We had reserved tickets the day before and printed them out so we could enter the 9/11 Memorial site.  We went through several security stops and finally we were there.  The somber sight of what was left! In my head, I had to fight off tears as visions of people jumping out the windows flashed in my head from documentaries we have watched. 
After quietly listening to the waterfalls, that now hold the place of the towers, we went to visit "the survivor tree". For the story of this tree CLICK HERE. Of course, I choked back more tears as I immediately felt a strange bond with this tree, if that could even be possible??  It too was a SURVIVOR! Although, the things this tree "saw" were too horrific for words it was nursed back to health and it is now planted back in the world, offering 'HOPE' to millions of people as they hear it's story.  Sure, if you don't take the time to really see it, the tree looks just like any other tree at the memorial (except that there is a silver railing to keep people from getting "too close").When you get closer to the tree you can see it still has "scars and dents" and there are ropes helping it to stand; like it once did all on its own. You see, because even "survivors" need help standing, again.  You can uproot us and replant us but we are going to need a lot of help and a lot of understanding.  And, yes even a little silver railing sometimes giving us some space from "everything/everyone normal". But, the amount of "new growth" since the injury on this tree is astounding!!  So I leave you with the song that ran through my head as I left the tree that day.  It is called "Beauty will Rise" by Steven Curtis Chapman:
"It was the day the world went wrong
I screamed til my voice was gone
And watched through the tears as everything
Came crashing down
Slowly panic turns to pain
As we awake to what remains
And sift through the ashes
That are left behind
But buried deep beneath
All our broken dreams we have this hope
Out of these ashes beauty will rise
And we will dance among the ruins
We will see it with our own eyes
Out of these ashes beauty will rise
For we know joy is coming in the morning
In the morning, beauty will rise
So take another breath for now
And let the tears come washing down
And if you can't believe, I will believe for you
Cause I have seen the signs of spring
Just watch and see
Out of these ashes beauty will rise
And we will dance among the ruins
We will see it with our own eyes
Out of these ashes beauty will rise
For we know joy is coming in the morning
In the morning
I can hear it in the distance
And it's not too far away
It's the music and the laughter
Of a wedding and a feast
I can almost feel the hand of God
Reaching for my face to wipe the tears away
You say it's time to make everything new
Make it all new
This is our hope
This is a promise
This is our hope
This is a promise
It will take our breath away
To see the beauty that's been made
Out of the ashes, out of the ashes
It will take our breath away
To see the beauty that He's made
Out of the ashes, out of the ashes
Out of these ashes
Beauty will rise
And we will dance among the ruins
We will see it with our own eyes
Out of this darkness
New light will shine
And we'll know the joy that's coming in the morning
In the morning
Beauty will rise
Oh, beauty will rise
Oh, oh, oh, beauty will rise
Oh, oh, oh, beauty will rise
Oh, oh, oh, beauty will rise"

Friday, July 6, 2012

Beautiful people quote

One of my new favorite quotes, because I know so many beautiful people (you know who you are):

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
Elisabeth Kübler-Ross

Thursday, June 14, 2012

You just can't make this stuff up, seriously!!!

I was frazzled today. After work, I came home and changed my clothes then went to the post office and grocery store. It felt like my knit "workout style" shorts fit alittle funny but I felt frazzled so I just went on with my day after deciding "I just didn't care why they felt funny". I didn't have the energy to figure it out!! Upon arriving home and chilling for a moment I realized that I had been wearing them backwards....LOL. The draw stings that should have been in the front must have been hanging in the back creating, as I imagine it, A TAIL! I sure hope the "What Not To Wear Crew" was not following me, or anyone who may recognize me in our small town. All I can do is laugh at myself now, it makes for a good story though, right???? It is true, I have NO SHAME!!!

Wednesday, June 6, 2012

BIANYS 2012

Here are links for my video recovery story and my handout as well as "what I said "or planned on saying if I didn't get off track!
LINK TO MY RECOVERY VIDEO:

VIDEO CLICK HERE

LINK TO MY ORGANIZER:

ORGANIZER TIPS CLICK HERE

THE HANDOUT:


What is a Brain Injury, Anyway??? OR  “Girlfriend’s Guide to Living with a Brain Injury ”

 According to Lisa………..


*ABSOLUTELY EVERYTHING IS EXHAUSTING!! I live in a world now, where there is no such feeling of  “well rested”, even 12 hours of sleep at night still means mentally exhausted!

*Feeling "numb" is normal. It feels like you are just watching the world go on but you are not actually a part of it. Perhaps it is sheer exhaustion and perhaps the brain can't keep up with such a rapid world!

*I have trouble switching or transitioning from one task to another; I find it nearly impossible!!!!

*I didn't have an appetite for years; I still don’t really have one, I eat meals at the same time each day to remember.

*Just because I can tolerate more things on a "good day" does not mean I can always or consistently tolerate them. On a "bad day,” my tolerance for any extra sensory input is greatly diminished!!!

*Dialing a phone number (transferring numbers), was a nightmare and beyond me, but being treated “like a child” only made me mad, since in my head, I was a fully functioning 25 year old!

*Talking too much makes me uptight, exhausted, and nauseous, due to “flooding” or too much information for my brain to process!!  Language processing is still a struggle and sometimes I just stare blankly during a conversation because I am unable to keep up (the first clue is me repeating “uh huh” over and over; it is the worst on the phone.) But, I still can't help myself, I usually just keep talking, ‘paying’ for it later!!

*I have to write a number next to each activity in my day. At first I needed help; now I can do it myself.

*My short term memory is terrible but is slowly improving (when I use my “memory strategies” like writing EVERYTHING down in one place and using my daily checklists).

*I was an emotional basket case. I cried at every little thing until I was put on a mood stabilizer!


*For the safety of everyone, I am still only "allowed" to drive in familiar areas. I literally can't navigate while driving! I will either forget I am driving or forget to navigate! ONE THING AT A TIME NOW!

* My attention span is greatly diminished; making it very difficult to concentrate on any one task for too long and I am now easily distracted by anything around me!


*Personality changes, you ask?? Here are just a few...........
-Rarely do I get excited about things like I used to.  Activities I used to really enjoy, have simply become exhausting and filled with "lots of steps; way too many steps to think about sequencing!" Things that you do “without thinking” take considerable thought and planning!!  Now, I am generally apathetic and melancholy.
- Now I like and need time alone (I mean like no TV, no phone calls, no visitors, ALONE). I never used to be this way, I was exactly the opposite, and I loved having people around me 24/7!
- I would be getting mad and not even know it, causing some episodes of what seemed like "flash anger" out of sheer frustration!
- More frequent panic attacks due probably to my inability to cope with all the extra sensory input around me!
- I have a very, very hard time being “flexible.” I like to religiously follow a schedule and want an exact plan for everything!!

- As a result of my injury my brain no longer has a “filter.” I generally say whatever it is I am thinking which, on a positive note, has made me a bit more “outgoing” than I used to be.

* You can now label my injury as "Acquired Brain Injury"(Acquired from a subarachnoid hemorrhage/stroke).  BUT, it has still been very traumatic to me!

For more details check out my blog at http://www.walkingtalkingmiracle.blogspot.com

WHAT MY NOTECARDS SAID ON THEM:

Hi! My name is Lisa.  As a former teacher, I had originally planned a short vocabulary lesson to help you through your day.  Then, being the overachiever that I am began planning an elaborate presentation about my story and recovery.  It would of course satisfy all three learning styles; auditory, visual, and kinesthetic or a fancy word for learning by moving and doing. If you have a brain injury the thought of this probably sounds exhausting to you.  Don’t worry, it did to me too!  So, I am just going to share a VERY short version of my story and recovery then let you ask me questions.  I printed out my “Guide to Recovery” for you since I had a lot of responses on my blog from people wanting to give them to family members to help them understand they are not making these things up.  You can find links on my blog if you want any more information.

Okay, on that note here we go.  I graduated from high school with honors and went on to attend a small private college in Western, NY.  I graduated in 2002 with an Elementary Education degree.  That summer I also married my husband, Nathan.  I taught in a special education classroom until I entered a Master’s program to be a reading specialist.  I never finished that degree because, on February 1, 2005 while driving to work an aneurysm or weak vessel in my brain burst causing a hemorrhagic stroke. I passed out immediately and was found unconscious but alive in my Jeep over a steep bank.  At the hospital scans revealed the bleeding was so severe, blood now filled my head.  Amazed I was even alive at this point, doctors tried to prepare my family for the worst!  Realistically, there was little hope of survival. Doctors stabilized me by placing me in a medically induced coma while they prepared to operate.  A piece of my skull was removed and a tiny titanium clip was placed to block off the aneurysm from bleeding any more.  By the Grace of God I woke up from that surgery.  My left arm and hand was completely paralyzed and lay limp at my side but, I recognized my family and spoke in broken, simple sentences.  When I had enough of people talking, I would simply say “sleeping” and close my eyes right in the middle of a conversation!! When I was considered medically stable, I was sent to Sunnyview Rehabilitation Hospital here in Schenectady.  There I was obviously diagnosed with a brain injury.  You would think that would have been obvious but I did not have any idea what I had really just lived through.  I was convinced I did great on those tests and they would tell me I was just fine! I actually distinctly remember asking my family over and over again if this was a dream or a joke!! Obviously, I had little grip on reality. 

I was sent home after all possible therapy was given speech, occupational and physical.  My long term memory seemed fine so I had a memory of “normal life” like walking and talking with complete sentences and reading simple signs but, I had no ability to use these in any functional way now.  That had to be taught to me all over again; even though I was convinced I could do all those things! I wasn’t home long before I had some residual bleeding which sent me back to the hospital to have coils placed through my femoral artery into another weak spot close to the first one.  I also had a permanent shunt placed in my brain to help with the building cerebral pressure.  After this episode my left hand started to respond to my brain trying to move it but, it still had a long way to go to be used again.  This time I convinced everyone to let me go home and go to outpatient therapy at Sunnyview, instead of staying there again.  I was tired of hospitals! Don’t worry, my father was able to take an extended leave from work and drive me to therapy three times a week.  I really still needed help with everything at this point. My balance was terrible and I literally walked right into walls.  I couldn’t figure out how to actually make a simple meal like spaghetti, even though I could rattle off how I remembered doing it.  So with a husband and family by my side we stumbled through the daily ups and downs of recovery. 

At a six month check up, we learned that the coiled aneurysm was growing and now classified as giant and at high risk for another rupture.  Doctors were forced to go back in and clip this one too.  They also had to remove my temporal artery and use it as a bypass around that artery with all the clips!  This surgery is usually performed after a massive stroke in older people and was very, very risky but there was no other choice! I survived this surgery too but at this point was sent back to inpatient therapy at Sunnyview!!  Here I learned how to walk AGAIN, and worked on using my left hand.  We worked on simple life skills like getting in and out of a bathtub, or car.  I learned how to walk up and down stairs and worked on using complete sentences when speaking. Therapists helped me try to focus long enough to read simple signs on doors and worked on making decisions like what to eat for breakfast, lunch or dinner.  I still have to repeat to myself over and over what I am trying to accomplish to stay focused! I often was frustrated and mad at people for what I thought was “treating me like a child”.  I couldn’t even recognize I could no longer actually do all the things I remember I used to do.  I was sad sometimes; I’m not going to lie!  It was only my faith that kept me going.

When I think about my whole journey the one word that comes to mind is EXHAUSTION.  There are just varying degrees of exhaustion.  Some days are better and I can tolerate more things.  Some days are still miserable and I just crawl back into bed.  Even 7 ½ years later there never seems to be any pattern to the good or bad days, they just are what they are!

I will probably never go back to teaching because it would be too confusing and exhausting for me! But, I do work at a library once a week for four hours checking books in and out for people.  It took me a whole year to learn how to do this. Most people can train in two weeks! I started by checking books in and out for a year in the back of the library where it was quiet and had minimal distractions! In the early days, I had a job coach with me for the entire shift, which started at three hours. I’m pretty sure without the job coach advocating for me my gracious employers would not have kept me on staff since I took SO much longer to learn very simple things.   I still have a job coach that helps me with things like, using memory strategies. For instance, I have a little list I carry around while I am there to help me answer people’s questions like; “what age do I have to be to get a library card?”  I also used to carry around an alphabet strip but have now “graduated” from that.   I can usually put things in order without it! I insisted on going back to work and living what I was convinced was a more ‘normal life’ for a 25 year old! My doctors insisted on having the right support while I stubbornly tried, they knew it would be impossible to talk me out of it!! I am pretty sure I could not have done it without my job coach by my side sorting out what confused me, which was pretty much everything.  But, that is the joy of working at a library.  I do my very best but at the end of the day it is, after all “just a book”. Even though I can still only tolerate very small amounts of time at an actual job it has helped me feel more like me again. I can remember my old self but can no longer identify with her!

Before you ask me questions, I would like to share with you how this slightly neurotic former special education teacher organizes her weeks!  I admit, I got most of my ideas from PJ Long’s book Brain on a String. I use this note book with a folder for each day.  I look at my planner to see what appointments I have and I put any necessary documents I will need for that day in my folder.   My notebook is ALWAYS stocked with plenty of post-it notes which sometimes are used to sick on the dashboard of my Jeep to keep me on track.  I also always have a magazine or book in case there is nothing good in waiting rooms! My grocery list is a pre-made one I buy at Target that keeps each food category together.  This saves me from a lot of unnecessary walking back and forth to get things.  I cross each item off as I put it in my cart and I try hard not to get distracted and off course.  It is still a struggle as I am easily distracted by anything around me.  If you see me in a grocery store I will be wearing sunglasses and a hat with a brim to block out as much florescent light glare as I can!

So, remember recovery is SLOW! Very, very slow.  Celebrate the small victories because they are truly big ones!! Take a lot of deep breaths and drink a lot of water.  My neurosurgeons tell me it is good for the brain!!  I also brought my computer and would be happy to show you a video of pictures I made from my recovery and therapy, if you do not have a computer or are unable to use one.  For the rest of you, there is a link on my blog if you would like to see it!  Have a great day today amongst people who truly understand!!!

PS: here is a link to a video clip of me speaking--> please don't compare and contrast, I missed a few things, I know!! My humble apology to my co-presenter Artie!  He did great and I'd like to include both presentations but, alas, this silly link refuses to fully download!! Fixating on it for days now,  I have tried everything in my power with an unfamiliar program so here is the most I could get!
VIDEO CLICK HERE :-)

Monday, June 4, 2012

Just like riding a bike???

Proof that I did indeed ride a bike!
Whoever said, "it's just like riding a bike" most assuredly did NOT live through a ruptured aneurysm or have balance issues from an Acquired Brain Injury!! It makes riding a bike sound easy, like something anyone can do with relative ease, RIGHT?? I beg to differ! But, I did it (for a VERY short distance, then my brain fatigue triggered some weird blood pressure issue and 'it all went downhill from there').  Even the memory of it makes me exhausted! I hadn't realized how hard it would be to balance while peddling to keep moving forward and steering to avoid immanent danger. Oh, and I had to pinch roll my jeans (not dressed for biking at that moment) which gave me horrible flashbacks from middle school...hehehe! But I DID IT, I RODE A BIKE :-)

10 Years!!! Can you believe it??

I had such high hopes of reflecting on ten years of marriage on the 1st of June since that was our actual anniversary, BUT it didn't happen.  So here you go, here are my thoughts on 10 years of marriage!
June 1,2002

June 1, 2002
So here we are 10 years ago not knowing what life had in store for us.  We had no idea that in only two short years our life would change forever after an aneurysm ruptured nearly taking my life!  The easy thing to do would have been to run!  Not sticking around to empty bedpans, have things thrown at you, holding my hand when I had no idea how to get on an escalator or being there to answer the phone and hear, "I just backed into the retaining wall in our driveway."  Now I could go on all day with the stories of why being my husband is not an easy job, but I won't! All I can say is, that I am so thankful for a husband who has stuck by my side for ten years!! In sickness AND in health, in good times AND in bad, that was our promise. He kept it, we kept it together!!! I will never know why he chooses every day to love me. Me, a very different girl from the one he married.  A life very different from what we planned.  I am more thankful for him and marriage today than I was 10 years ago (hard to imagine, right).   John Piper says in his book, This Momentary Marriage, "Marriage is not mainly about prospering economically. It is mainly about displaying the covenant-keeping love between Christ and His Church. Knowing Christ is more important than making a living. Treasuring Christ is more important than bearing children. Either way, it is short. It may have many bright days or it may be covered with clouds. But if we set our face to make of marriage mainly what God designed it to be, no sorrows and no calamities can stand in our way. Every one of them will be not an obstacle to success, but a way to succeed."
Thank you Nathan for loving me!!

On our honeymoon in Maine 2002
2005 somewhere "in between"


Oh, and click HERE for a link to our Cape Cod, Nantucket, Martha's Vineyard trip!!
10 years later 2012 in Cape Cod, MA

Wednesday, May 30, 2012

Real life now.........

Crashing again after doing too much!  The mental exhaustion is hard to explain.  I often say, it is like living life, permanently in finals week at college! Everyone is asking too much of you, all you want to do is go to a quiet dark corner and pull the covers up over your head and begin to rock as to warn people to 'stay away'!  So, with that being said, I am just going back to bed today.  I am forgetting about my "to do" list, I am in survival mode!  Vacation was wonderful and I actually didn't feel too bad after coming home.  I should have stayed home from a Memorial Day picnic though, too much talking and too much noise! A movie blasting in the background as people kept trying to talk to me!  I am so fried now, I have to get better at advocating for myself instead of trying to fit into the "normal" mold!!! I'll post pictures when I have recharged. Our anniversary trip to Cape Cod, MA was SO amazing, I loved every single minute of it! Stay tuned!

Thursday, May 17, 2012

Finding Nemo - Just Keep Swimming


According to the Brain Injury Association, Dorie the fish, portrays people with a brain injury. Perhaps she is just a forgetful, unorganized, free spirit suffering from 'short term memory loss'. I'll let you decide for yourself. Either way, she is a faithful friend even if she struggles! I just love this scene and sometimes sing the first few lines to my coworkers when the library gets especially busy or people are particularly miserable to us. It is my way of lightening the mood so we all laugh, and keep going; instead of running out the door! So, "just keep swimming" my friends!

Sunday, May 13, 2012

laughing to myself about myself, again!

I had to just stop and laugh at myself the other day.  I was asked to present at this year's NYS Brain Injury Conference.  I was just SO honored to be asked I couldn't even stand myself.  I snapped into 'teacher mode' (yes, it is STILL buried deep in the depth of my fried brain.) I was asked probably in the middle of March. By the end of March I had a 15 minute "presentation" all laid out including a video of my story, handout, and a Power Point to go with my handout (I even lined up borrowing a projector from my dad)............the presentation is in June!! It wasn't until this week that I was actually able to speak with the person presenting with me.  He has spoken several times in the past, and together we decided "less is more".  I am going to scrap my Power Point!  I will still bring the handout and my computer if anyone wants to see my video and doesn't have computer access/knowledge.  After hanging up the phone, I had to laugh at how much has changed since my aneurysm.  Before, I was a "Last Minute Lisa".  Seriously, I was writing final papers at midnight, cramming before exams (working best under pressure).  It worked pretty well, I graduated from a private college with a 3.29 something GPA, definitely NOT amazing, but respectable, considering I always tried to make people and friendships more important than perfect grades!!  Not to mention, having a horrible headache every single day of college.  There were varying degrees of migraine, from convulsing and throwing up in pain, to just a constant headache that no medicine would even touch (and believe me I tried EVERYTHING legal). I don't know how I did it, perhaps it was just preparing me for the insane relentless fatigue I would live with now! As wretched as the debilitating fatigue, confusion and overall inability to cope is, I'll still take it over those headaches!!

Okay now back to my actual point; before TBI, I would not have even thought about the presentation til probably next week! That Lisa is LONG gone(the one that was a terrible procrastinator), I remember her but I can no longer identify with her.  I have to be 15 minutes early to everything allowing my brain proper time to "readjust and prepare," for whatever it is I am going to do!  No more getting up last minute and putting a hat on instead of taking a shower (that would totally ruin my whole day now!) If I wear a hat now to hide my hair, it is probably because I didn't have the energy to shower not that I didn't have time.  Most often, I wear a hat for the brim, to block the annoying amount of light searing my light sensitive eyes!!! Perhaps, this is just a result of natural 'maturity' but I prefer to blame it on my brain injury, since it changed drastically, in a single instant!!! :-) I am still glad that I went all "crazy lesson planner" since it has helped me prepare for a simpler presentation (so simple I will just share my story and have a handout of how it affects me daily, then answer questions, SIMPLE is such a relief) and has given me the opportunity to think through things which I think will make answering questions A LITTLE bit easier! I am so excited to be even a very small part of the conference this year!!

Saturday, May 12, 2012

poem :-)

The Diary of Me by Candi Vandegrift

 What happened to the girl who danced like no one was watching?
What happened to the girl who sang like no one could hear?
I seem to have lost her along the way.
How do I get her back? I don’t even know where to start.
...
What happened to the girl who gave her whole heart and nothing less?
What happened to the girl whose passion was equal only to her stubbornness?
Well, I guess the stubbornness remains, but where is the passion?
Being just fine has become good enough.

I used to eat, breath, and taste life.
I would leap before looking…and it felt great.
I wanted to try everything at least once and travel the world.
Now my world may as well be a box.

Did I lose that girl when I became sick?
Did I lose her when the passion became fire and she got burned?
But, I need to get back to her; she is a part of me.
And without that part, I will never be complete.

Thursday, May 10, 2012

The Story of Ian & Larissa (Original)


"Marriage is not mainly about prospering economically. It is mainly about displaying the covenant-keeping love between Christ and His Church. Knowing Christ is more important than making a living. Treasuring Christ is more important than bearing children. Either way, it is short. It may have many bright days or it may be covered with clouds. But if we set our face to make of marriage mainly what God designed it to be, no sorrows and no calamities can stand in our way. Every one of them will be not an obstacle to success, but a way to succeed." -John Piper
Okay, this clip made me cry, like 'find a box of tissues cry'!  Probably because, I know this is the reality Nate thought he would have to face.  He has told me about his early days in the hospital designing wheelchair ramps for our house and trying to wrap his mind around doctors suggesting he begin looking at nursing homes before I "woke up or came out of my drug-induced coma".  Either way, he was going to be there for me, honoring his commitment "in good times and bad, in sickness AND in health".  Sometimes it feels like there has been more sickness than health but then I watch this and in reminded of how blessed I am and, maybe there is more "health" than it sometimes feels like! Either way, I am so inspired and encouraged by this couple!! I hope you are too!