FaceBook Dialog on Traumatic Brain Injury ( 11MAR2013 )

Help raise Traumatic Brain Injury Awareness

Too well for rehab, yet not well enough for work or school…where do we fit in?
Sue Hite Relatable… Living it…after brain tumor, skull surgery I fit this category… To escape physical. Pain and neurolgical issues.. I use FB & SC linkedIN, YouTube, etc as the escape to tolerate my crap… I look ok …but questionable to me, ….docs can only do so much… Should not complain …would not be alive today w/o that surgery…. Still much to thank God for in my life…just have to be positive & lean on your faith…IMO.

My diagnosis was “acoustic neuroma”… Initial symptom was hearing loss in one ear.  If you or anyone you know has hearing loss in just one ear, give it immediate attention….because if caught early, there are nonsugical treatments.

In my case the tumor was large, so my only option was immediate surgery…it was crushing my brain stem…without the surgery, per my surgeon, I would soon not be able to breathe (ha…with or without scuba gear)…

So in my case where I’d been concerned about potentially having a hearing aid, I learned it was much more serious.  My case was rare because my slow growing tumor had been present for many years, without any symptoms… also about the time I was checking into the hearing loss… I also noticed a few balance / stumbling issues as well as tingling fingers & toes… All very intermittent events, barely noticeable…. telling this so if anyone else happens to have this…get it checked.

Post-op I am deaf in one ear (right ear) but cherish the 100% hearing in my good ear.  Fine motor skills improved from not being able to write, to writing & drawing again…not as good as before but I am thankful to do as much as I do…. Truth to that old saying ‘ you don’t know what you’ve got till its gone”…

Walking improved from walker to cane or no assistance at times.  I look fine on the outside usually…there are wobbly times though with my balance.  Rehab has plateaued so those exercises are done on my own at home.

My chief complaint is the fatique from ongoing dizziness & nystagmis coupled with a head pressure…. No fix for any of that other than pain killers, which have various other side effects besides dizziness….nothing more can be done…. So although the  Medical field/ insurance companies are in a grey zone in cases like mine (ours)… We struggle daily with issues others do not, cannot, understand …

I wish there was a way to convey understanding….

If you are one of those people trying to get a grasp on understanding it… Just know this, any small kindness you offer is not unnoticed…. You do not need to have the experience yourself just be nearby for those on this ‘secret’ journey… kindness & compassion, respect & love are most helpful… For people on this journey know there are no answers, and recognize it as a situation over which no one but God has control…. Frightening for certain… But so worth the fight…never give up, take baby steps each day & fight… You know firsthand life is not fair… So fight!

Make peace with your feelings, it is no ones fault this occurred …if you need to blame someone, then blame God… Cause he/she has a purpose for eveything…

Perhaps focus on your purpose and find a small thing you enjoy…find comfort in knowing you are a part do God’s plan…

Even if days/nights are a struggle…

Be positive and fight…

And do NOT be concerned with those people who do not understand …that is not important.

Just be glad, and proud,  that you did the best that you could that day…no matter how small…only you know where you’ve been and the triumph of passing many milestones.  These statements are just IMO opinion…I focus on the positive cause the dark side of pain will eat you alive if you let it… Don’t let it….FIGHT!!!…this is what I do.. Not all can fully be explained.

Not sure this will help any of you but giving up an active life is diddicult. I believe the key is not to give up on life period. Yeah… I have had much loss… my job…will never garden, dive, golf, bike, hike, etc etc… But after much time rehabbing I found myself in plateau territory (better than decline territory) and renewed many interests and reconnected with family, friends, colleagues via Facebook, SoundCloud & LinkedIn… I am so very thankful.  Plus my church broadcasts services via their website… I mention this because an overwhelming nightmare for me in this journey was going from a very active/demanding work life to suddenly finding myself home alone facing challenges I never imagined would happen to me…or anyone.

The technology of social media has soothed my heart & soul and lifted the isolation… I cannot express how important this might be to your loved one in a homebound situation. In addition, KidsDoodle & PicCollage apps on iPad have been invaluable to me…very easy for any age person to use. Sorry, to be so lengthy, got caught up in the spirit of sharing… Hope this might be helpful.

My favorite free links are…

FaceBook:  https://www.facebook.com/sue.hite.56?ref=tn_tnmn
SoundCloud:  https://soundcloud.com/sksskh
LinkedIn: www.linkedin.com/pub/sue-hite/10/95b/ba5/
Thanks Maureen!…Please feel free to copy it and share.  My LinkedIn  profile writing is woven into my cv….  mostly speaks about my post – op surprises.  I still have not written about the 12hr surgery, 2day ICU, & 9day hospital stay… Perhaps a blog is the place for it… Not exactly sure how to do that either… Maybe on FB notes.
There is a group for Acoustic Neuroma where people can ask pre & post op questions, as well as get info on other treatment options. They just changed sharing formats from group email to Google+. I am a member still but could not find the group on G-+…. Honestly, I did not really try that hard to find them… I’m lucky to do FB … Perhaps I could ask one of the leaders about a blog spot that would be available to that AN group.
Not sure my story would be of much value to that group though…since they seemed to be more focused on debating treatment options… When I did ask a few questions the replies felt akin to a brush off since they could not answer, and stupidly (IMO)  said that people with tumors as large as mine were essentially vegetables…. Not their exact words, I have a low opinion of the ‘low ‘ support the insensitive  egomaniacs sport in that group…. I was not about to join in on any further ‘competition’ type dialogs where the ‘winners’ are near vegetables.   I was happy just to type my questions.  It’s taken a long time for me to even express to myself what happened, so perhaps the varied agendas of that group were not a match for me at that time… I might be able to handle it better now…as you can imagine I do not like to dwell on it… And that group had daily discussions…TMI.  I think a blog may be the the right speed for me.  I find that cautioning others by sharing my experience makes the telling easier.  Thanks a bunch for the blog idea!
This is off topic…but I recently made a couple of recordings to read of out of print children’s books …as well as a couple of original stories on
Turns out my remaining ‘good’ ear for music provided songwriter/ musician friends with comments on their work… since I often commented on their songs they urged me to speak up and record a listener bio… So I gave it a try.  At any rate, those tracks are open to the public to play/download… Not sure if any of the stories are applicable to your son’s age group…but you are welcome to those as well.
Well,  the surprise  never stops…then the artist friends said ‘ make a video’…well I tried…and the result is on YouTube …total video time is 2min but uploaded kept saying the file was too large…so I divvied it up…there re 3 very short videos…in a vertical narrow format.  One of my artist friends said ‘ next time hold the camera horizontally…. Even after watching me, this friend saw nothing wrong… Could not tell how dizzy I felt… did not pick up on my frustration of not being Able to get a cupcake or flower 100% on camera…even though I said ‘screw it, look at the pic in my FB album’ ….the rest is me giving a ‘ tour’ of my apartment without walking around much…I just did the recording to learn how to record… So it’s  unscripted stuff, clowning around , off the top of my head directed to a couple of friends…Haha,  if I’d known it would end up on YouTube…  maybe I would have combed my hair…LoL You are more than welcome to use the sound cloud tracks and/or YouTube postings if you’d like. I’ve always been sort of a clown in that I have been blessed with a healthy ‘funny bone’  ….at least that remains intact.    :)))

Additional links:

MRI of my large tumor before surgery & Discussion of Acoustic Neuroma:

youTube Video does not totally show my unbalance, dizziness, head pressure (scar tissue & nerve damag), difficulty with fine motor skills/coordination, intermittent tingling in right foot & hand, constant numbness in right foot, vision nystagmis, fatigue….but MANY other pains have subsided thankfully…. Improvement seems to have plateaued 3-years post op. Hearing issues involve things like not being able to locate a direction with the sound, or not hearing well in a noisy environment… Or not hearing at all if my left (good) ear is blocked by a pillow… Which happened two weeks ago when I did not answer the door or phone… So the Homecare agency called the rescue squad… I could not hear those sirens either… I just happened to move my head to check the clock…then I heard the phone ringing and sirens blaring in the background… As I answered the door, I learned that the ambulance was there for me… I felt terrible not to have heard the phone or door… And for causing such concern… my aide was truly shaken,…. as was I in learning of the circumstances.

‘Sue Hite’ on YouTube:

1/3 BAD HAIR http://www.youtube.com/watch?v=Qz1AwibLKdI&sns=em
2/3 BAD HAIR http://www.youtube.com/watch?v=CP2chYDXT9I&sns=em
3/3 BAD HAIR http://www.youtube.com/watch?v=i1Azb_0pWbM&sns=em