You are finally getting your life back in order. You are alert and oriented, don’t feel like much and yet so much has changed. The world is very different in every respect of the word. Recognizing things and events is different. The people in your life seem different. You notice everything…lights and noise are the most bothersome!
It’s a new world with blinds. Sometimes the blinds are open and you have a clear picture. Other times the blinds are partially closed and you can barely see out and don’t know what to do. As you peak through the blinds, you make progress. Then they close on you. It’s that level of confusion that suddenly attacks you. Something you’ve never experienced before.
These blinds have no controls. You have symptoms simultaneously, and you try to control them. They are unpredictable, and you feel out-of-control. There is no controlling the symptoms. Now, you spend days, weeks, months and even years keeping them from controlling you. Where’s your friends?
In the beginning
- Everything has changed
- World is different
- Noise and lights bothersome
- People seem so different
- No control of symptoms
- Life becomes unpredictable
- Feeling out-of-control
Old Friends, New Friends (Photo credit: Wikipedia)
It’s all new to you and NO one around you truly understands. Yet, other times the blinds are nearly closed and you are in a “fog” struggling to open the blinds. You simply don’t know where to go or how to get there. You can’t open the blinds. Extreme confusion sets in. It’s time to sleep! It’s a lonely journey, even with the best friends and family by one’s side.
If you had rehabilitation you are now on your own. If you have always been on your own for recovery and rehabilitation this has already been a long and lonely journey. You finally are looking for just someone that listens. Your friend may have been encouraging you and holding your hand when you were not aware early in your injury.
Now it seems that no one likes you. You don’t like yourself or who you’ve become! You’ve never worked so hard in your life. Every day is a challenge. You now challenge yourself, you challenge your friends, and you challenge your family.
- No one understands
- It’s a lonely journey
- I’m here, but alone!
- How do you like someone you don’t know?
- Didn’t know living was so complicated
As you struggle to exist, your family and friends are struggling to understand. They are depleted of both physical and emotional energy. They’ve been on a roller-coaster praying for you and believing you’d get better. Now, you don’t meet their expectations. You don’t meet your own expectations. It’s a hard tug-of-war!
- No one understands why you are frustrated and overwhelmed.
- Struggling to exist
- No one understands
- Friends struggle to understand
- Friends depleted of energy
- What were the expectations of recovery from friends?
- Don’t meet own expectations
- Who is the new you? Where to begin?
There is so much no one knows about brain injury, but the basics are explained to the family. They always give the worst case-scenario! Families are told “you will never be the same” … and they believe that! This prognosis puts you under a microscope and every fault you have is at the forefront.
Families and friends are exhausted and begin focusing on all the negatives. They aren’t looking at the leaps and bounds you’ve made over time. They are simply drained of their emotional energy.
They continue to compare you “before injury” and “after injury”. Is the problem yours? Is the problem theirs? As though no one else has faults! Now you have all the faults from the “before injury” compounded by all the faults “after injury, including everything someone else says about you. You become the problem regardless of how well you do! It’s a fact … no one believes you because you have a brain injury or an old brain injury. Now you’ve become vulnerable and are a stomping ground and target for blame.
What happened?
- Family given Worse Case scenario
- Your Actions and reactions are under a microscope
- Friends are exhausted
- Friends focus on negatives
- Friends are drained of emotional energy and physical energy has taken toll
- Friends compare “before” and “after” injury YOU
- All faults become yours
Imagine everyone correcting everything you do and pointing out every single fault. That’s disturbing! All TBI survivors must have been angels prior to injury because suddenly all these faults become the focus. It’s time you write down the faults of others and compare. The list of your faults versus others might not be that different! Let’s protect ourselves. Speak up.
Remember that every good friend was once a stranger☺☻ (Photo credit: Vijay Bandari – Moved to other account)
Have you been told you are “rambling on”? What if you asked that person if they have time to “listen”? Again, you would be blamed for being rude. No matter what you say is important. Maybe the real problem is that you can’t get to the point, and they don’t have time to listen! It is time people are less critical and step back and take on their own issues.
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- Energy & Emotions – Part III: Choosing Your Emotions (justbreatheslowdeepbreaths.com)
- so much more (sacredlymundane.com)
braininjuryselfrehabilitation 
meesher
October 7, 2012 at 12:40 am
I start every sentence with a new stranger with “Hi, my name is Michele McKenzie, I have a brain injury and I’m an epileptic”, do you know me? Imagine repeating that all the time. But I do. The women in my grocery store are a credit to womanhood. The check- out ladies at my drug store (CVS) are so overworked or under-educated that they just grab my checkout stuff and hand me change.
In all these years, no one has stiffed me in change. One woman, working as a desk clerk at a Marriott bar,at 7 months pregnant, actually gave me BACK a hundred dollar bill that was stuck to the one I handed to her. That 8th floor that no one can get to but the people who belong there is mollifying. Between the head injury and the first epileptic seizure, I did go back to work, and those private floors were cool.Then the seizures began.
brain injury self rehabilitation (BISR)
October 7, 2012 at 7:01 pm
Introducing yourself is a great way to lead conversation. Conversations can easily be misconstrued with word finding difficulties and fragmented or loss of thought. Does this help with others to understand? Have you found it beneficial to educating the public?
philippinewanderer
October 9, 2012 at 5:36 pm
Hi Bisr, wow this is a powerful story that deserves to be heard by all. I shared it on my facebook page and would like to incorporate it into my articles on TBI, if you wouldn’t mind?
It’s as though you picked my scrambled brain and described a portion of it exactly. I find that nobody likes talking to me anymore, but I always assumed that the reason was because of my poor, nasally sounding speech. But then, I know that a carefree conversation is impossible for me because I have to be on guard constantly and, lo, I should make a mistake…Like when I spoke to a psychology class at a local community college and I was searching for the word cerebral, well you know what happened, the word that I spoke was “Celibate” and I didn’t realize it until having breakfast an hour later.
I am continuously making mistakes sorry.
Maria Rose Thomas Tatham
October 9, 2012 at 10:42 pm
Edie, it’s great to be here again and learn more. It sounds like a constant struggle. Your comparison with window blinds being opened and closed was such a strong one, and really put across the confusion and changes you have to endure. I think it’s great that you pointed out that, when a TBI sufferer is criticized, they should remember that the ones criticizing them have many faults too. This just makes so much sense.
Perhaps it’s wrong to tell families that their loved ones with TBI “will never be the same.” That may be as bad as saying that they’ll be completely well someday.
Stay safe! Bless you!
Maria
brain injury self rehabilitation (BISR)
October 14, 2012 at 5:54 pm
Maria, Doesn’t this sound like the Self-Fulfilling Prophecy for the families. It just makes sense that TBI survivors and others with similar problems are set up for failure regardless of how hard they try, unless of course if money is involved!
I think you are right. Telling someone they will be “completely well” or “never be the same” is equally damaging. How often do we hear about accidents on television that they say they expect a full recovery. Who’s playing God? Then the patient expects full recovery, and feels a failure when they can’t reach these expectations.
Now we hear “No life threatening injuries”, and I take that to believe there must be LIFE ALTERING injuries!
Take care and stay safe,
Edie
Maria Rose Thomas Tatham
October 14, 2012 at 10:47 pm
You too my friend!
Blessings abundant!
Maria
brain injury self rehabilitation (BISR)
October 14, 2012 at 6:19 pm
You are more then welcome to use the articles in whatever way is helpful to you. Isn’t it sad that we are corrected constantly? I make a point that when my friends use the incorrect name or words I never correct. If I know what they mean, what is the point of correction? We burden all our mistakes, and all the mistakes others don’t want to take responsibility for. It’s a vicious cycle.
philippinewanderer
October 15, 2012 at 5:17 pm
Yes BISR, I agree with you totally. Case in point: my daughter’s kindergarten, first and second grade teachers all sent home papers and the teacher had misspelled words on them. As my eldest girls are older than my youngest daughter’s teacher’s I began to question myself. Surely a teacher would not send papers home with misspellings. Then I read the first grade library book my daughter brought home and in the flow of the writing were many wrong spellings; it was intended to be like that. Well, luckily Stephanie began reading at age four and knew and pointed out to me the many gaffes. Woe be to the children that don’t know how to read before beginning school.
brain injury self rehabilitation (BISR)
October 15, 2012 at 7:47 pm
Isn’t it funny that we question nearly everything and we have learned not to react, where others would react spontaneously? Misspellings from teachers is never acceptable. I would have been trying to figure out why, without saying a word. You identified the problem. Can you imagine how others reacted? It could be very confusing to a young child, since it’s confusing to an adult.
brain injury self rehabilitation (BISR)
October 15, 2012 at 7:40 pm
Thank you for the reblog. I hope it helps others.
philippinewanderer
October 15, 2012 at 9:51 pm
Could you tell me your e-mail address please? The question I have for you is too long and personal to ask here. The question deals with some legal issues; I will explain in the e-mail. Thanks. In the meantime, if you check out the month of August under the archives drop down on my website philippinewanderer.org you will get an idea of what I will be talking to you about. Please let me know asap because sentencing is Wednesday. Thank you.
brain injury self rehabilitation (BISR)
October 15, 2012 at 10:01 pm
I’d be happy to see if I can help you out. My email address is: edithflickinger@yahoo.com
Tanveer Rauf
October 20, 2012 at 2:26 pm
you not only educate but provide immense knowledge and food for thought for oneself. thank you for being there 🙂
brain injury self rehabilitation (BISR)
October 20, 2012 at 6:21 pm
It’s always good to get feedback. It’s good to know you find this site educational along with other things to think about. Are you finding yourself in some of these situations?