Living with BI- means life has forever changed in less than a split second. It is not something one can see and know we have a problem. It is not fun to have to explain why my husband is with me all the time, why he goes into every doc appt with me, why he either fills my paperwork out or helps me do it. At least when I recently broke my shoulder I had a sling- so it was obvious something was wrong. I only wish it was that easy with a BI. I have set goals- starting with small easy ones. It is depressing to know life will never be what it once was. My husband retired before I had my brain injury (it was a SAH, non anysirum- I lost the ability to spell too), and now he spends his time taking care of me. I can longer drive anywhere- because I get lost all the time, I used to have a GPS in my head from an early age. I can't speak easily or read well anymore. I lost a lot of abilities- but I can't say that I gained anything from this.
I wish you well on your documentary.

Hi Moni, My BI showed up suddenly at work, I went from major multi-tasking/multiple computers/lge stressful teaching hospital, to being barely able to write one check a day to pay my bills....no more job, no more multitasking, no stress,no computers/books,magazines for Years. Within @ 5 minutes I would get such severe eye/brain pain I had to lay my head down sometimes right on top of my checkbook...not kidding!! To say it changed my life is an understatement. BTW...Severe Cognitive Fatigue is what I was told I had! Depression, Memory problems, Confusion/Anxiety too...and the big thing is these symptoms are often invisible/misunderstood.

Over the years I volunteered with animals (very rewarding) and slowly used simple brain games to rebuild brain connections so I could use a computer (tablet). That was painstakingly slow and frustrating...sometimes I could only play for minutes a day I got so fatigued, it took over a year, but I regained that ability, but with limits, time, low light, large font, but that was a big achievement for me, plus I found this great group!! My memory has also improved, but just one bad night of sleep puts me in the *twilight zone*

I wish more people understood more about TBI/ABI....if they did maybe there would be more patience....but I've thought about this...there is no way to really understand unless you have had a BI.....the closest thing to help someone understand a tiny bit, is to have them read all the pages of posts here...there is real first hand knowledge, problems/issues/info /emotion/that a non-injured person might never think of!

I also wish there were more services for the many homeless people that fall thru the cracks....it breaks my heart to hear that over 50% of homeless men are TBI/ABI survivors...how many Veterans who fought so bravely are not getting the help they deserve! For a good video look up 60 minutes segement "Invisible Wounds of War" from last year.

I wish you the best with your documentary...we are all different I know...but my little saying is "I may be different but I'm not dumb" and yes there is aways Hope.....it just takes time to heal! Blessings, cheesecake

1. Losing the person I was. Thinking I'm not changed and then feeling dumb when I get things wrong. Going through the grief again. Ill health and pain. Ignorant people including some nasty doctors (not psychiatrists - the ones I've met seem very clued up in the U.K.) Worries about the future.
2. Completing my agriculture course....except maths which I cannot do at all.
3. Giving me time to process. Not judging me when I can't face recognise. Not taking on information about B.I. and cutting me some slack. Lack of acceptance.
4. To go back to casual part time work next year in a wildlife park without imploding. I have the job offer but not the confidence yet...working on strategies for remembering with occupational therapist at present.
4. Also to try and give my boys a helping hand with their needs, so that they have a future too. To TRY and be a patient mum even though sometimes it's such a challenge.

1. I struggle most with just keeping up with people in normal ways. What everyone takes for granted is a struggle for me.
2. I am proud that I learned to walk again, and have tried to make a difference even though I don't work.
3. I wish people would be more patient with my seizures. When it seems like I am staring off into space and ignoring you.
4.My next goal is to try and get into better shape so that my brain apathy slows down some.

1. What do you struggle with most?

For the most part "looking like everyone else" and having to explain why I can't do a lot of things that I use to do.

2. What achievement are you most proud of accomplishing?

Well....my BI is Acquired (ABI) secondary to a Glioma (brain tumor) so first would be bucking the survival rate odds...but I thinkmy major accomplishment has been continuing to adapt and live independently and have a very good quality of life despite the changes that keep coming.

3. What do you wish people around you were more patient about?

My gait...which looks horrible and I have went to a walker..but dammit I am STILL alive and walking. The cognitive slowness/slurring when am overtired.

4. What's your next life-goal?

Besides a letter writing campaign to get a Dunkin Donuts franchise to come to Greencastle? LOL! Short term is to get a few months squirreled away in savings for emergencies...midterm is to get back to travelling solo again...one of my greatest joys...that and photography. Last Spring I ended up with seizures and it put a damper on solo travel this year. Depakote has (thus far) been sucessful in stopping them. Long Term...I want to see Paris and Arles and Giverny before I die.

Hi Moni, I hope I"m not too late with my feelings. We have had a death in the family, so time has been taken up with that.

I had brain surgery 31 years ago, so brain injury is just a part of life for me. ( I was also involved in a car accident that left me with global brain trauma, then a few years ago had a concussion that caused a brain bleed) . I know my both my strengths and limitations and work successfully within those confines. I never want my brain injuries to be my identity. I want to be known for my kindness, compassion and sense of humor. "And, oh yeah, I have a brain injury" . I want that to be a secondary part of my life and identity. This is sometimes a struggle because I don't recognize people, and they don't always understand this. I have to remind them of the head injury that caused this problem , So for a moment brain injury is my identity.

As far as achievements are concerned, my greatest has been raising two wonderful daughters. I have no memory of them as very young children ( memories begin when they were about 10 and 12) , but I say to my husband "We must have done something right to have such remarkable children." He'll go on to remind me of how I was a good mother to them , especially when they had problems . I think having a mom with "special needs " ( like not recognizing them when I walked by them on the street) has made them more compassionate and loving to everyone around them.

I really haven't come across situations that have caused me to wish people were more patient with me. Other than the face blindness, I rarely feel as though I am slighted in any way. I Do sometimes wish a person could walk in my shoes for a day so he'll stop saying 'I do that all the time". That's my main complaint. If someone doesn't seem to understand that I can't socialize for more than 3 hours, I'll simply tell them my brain can only handle so much stimulus, and I've reached my limit. They seem to understand.

I don' t know that I have a concrete "next life goal". My philosophy is the quote "Life is too short not to be lived to the fullest". My goal is to live a life that touches others as we all travel our own journeys in this world.