"You Are Not Alone" : a message from the Brain Injury Association of Ame...

Finding vocational resource services for brain-injured people

This is part of a letter I wrote to an out-of-state vocational resources service. I have been looking for resources in Indiana for the last 29 months, with no success.

...I have found these Indiana sites, and have called and spoken with the head of [an]Indiana Vocational Resources organization, and have not found any programs for brain-injured people.

http://www.adaindiana.org/
http://www.in.gov/fssa/ddrs/2636.htm
http://www.biai.org/
http://www.topindianapolislawyers.com/.../

My own difficulties are a nearly total lack of episodic memory, but with increased ability to recall facts that helps compensate. Journalling has proven to be the most useful way to adapt to lack of episodic memory (which my neuropsychologist calls "sequencing"). I am also plagued by mental fatigue that builds rapidly any time I do any kind of mental "work," that I can feel depleting my mental energy reserve. As I work. I can feel parts of my brain shutting down. Mastery of numbers seems to go first. If I continue, I eventually get slurred speech, and get caught in time-consuming "loops" of repeating steps up to a point that requires me to look something up....then suddenly I feel confused, and start the same task over. These loops can steal hours of my day without my awareness of passage of time. Usually it takes having someone else interrupt me to make me conscious of what I'm doing. I rarely let the confusion get that bad. When I feel the first symptoms coming on, I take a caffeine pill to extend my workable time a little, and I bring my work to a close, with notes to myself about how to continue. Then I go take a nap. My productive cycles average 2 hours, but may take half and hour, or four hours. The nap time required to refresh myself can take as little as ten minutes, but usually takes two to four hours.

If you can help me find Indiana resources that can help, they would be greatly appreciated.

Compensating for lost abilities

A friend commented that her hearing loss in one ear (due to a head injury) is becoming less apparent to her. Her brain takes what she hears from one ear, and gives the illusion of hearing from both ears. I responded:

I'm sure that's possible. People who suffer blindness often talk about enhanced hearing and an enhanced sense of texture. 

I lost much of my episodic memory, but I believe my memory for facts is better than it ever was (probably a compensatory change). Combined with my notes and automated evidence collection with various applications from my phone and computer dumping information into Evernote, which I daily tag and organize, I have a sense of what has happened each day that often comes close to episodic memory. (But make no mistake, natural episodic memory has a sequential quality that constructed episodic memory does not have. It's sort of like the difference between seeing a person or seeing a black and white photo of them.) 

My difficulties with tracking time have also caused my philosophy to change. I think in terms of "now," and both the past and the future have the feel of something I read in a book. Only "now" seems real. I also think in terms of "seasons" instead of activities: such as deciding today is a time for doing laundry. I may not get much laundry done, but thinking that way enables me to ensure routine tasks get done, whereas schedules tend to get forgotten, because my brain doesn't work that way now.

The one area that still "sneaks up" on me are tasks I start, only to discover I already did them. But even that annoyance has become so common that I shrug it off rather quickly now, when it happens, so in a sense, I'm beginning to feel "normal" in spite what is obviously still not working. I still hope that in a few years I will recover enough to not need disability, but I'm still fighting to get it. I will probably know whether I am considered "disabled" by the end of next month.

Regardless, the bottom line is, that unless there is work that can be done on a flexible schedule, 2 hours at a time, and no more than 6 hours a day (including travel time) there probably is no kind of work that I can do

Brain Injury Attorney? The Important Difference for Outcome

I have no personal knowledge of this attorney, but the comments in this advertisement are worth while reading:

Brain Injury Attorney? The Important Difference for Outcome

What To Look For in Hiring a Brain Injury Attorney 

By Gordon S. Johnson, Jr. , Esq.
Call me at 800-992-9447
Consider a brain injury attorney if you are searching for legal assistance after you or a loved one has suffered a brain injury or coma.  The process of choosing an attorney at such time  can seem very complicated.  It may feel simpler to go with someone the family knows or with someone famous who you see on TV.

Yet, hiring the wrong lawyer in these desperate hours can have devastating impacts now and for you or your loved one’s future.

You realize that an attorney’s education, their experience, their knowledge, and their trustworthiness are characteristics you need to explore. In addition to those characteristics, we suggest that you choose a brain injury attorney because such a lawyer not only understands brain injury, but also has the time and dedication needed to work on your case. Lawyers who specialize to the level of being a brain injury attorney, are only working on big cases and thus have the time to treat your case like it is the big case that it is.
Brain injury cases take a long time to resolve.  You will be in contact with your lawyer’s office many times.  If you hire a brain injury attorney, your lawyers will understand not just the legal issues in your case, but the issues of a brain injury.

Make sure that the attorney’s paralegal or legal assistant is understanding and takes the time to listen to your concerns.  Speak to them.
Do they make you feel comfortable?  Do they speak respectfully and at a comfortable pace for you?  Do they make you feel they will be available for you to ask questions? 

How easy is it to reach them by phone?  Do you need to leave endless messages or do they call you back quickly?  How long will it take for you to speak with your attorney when you call?  Does the attorney have the time to give your case adequate time and resources?

At the Brain Injury Law Group, S.C., we have one brain injury attorney: Me. We take individualized time with each client.  We limit the number of cases we take on so that we are able to serve each client with the time and attention they deserve.

Nothing is more important in your case than the paralegal who is your constant contact person. Jayne Zabrowski knows brain injury and cares.

When you call our office, you will speak directly to Jayne Zabrowski.  Jayne will always treat you with kindness and respect.  She will pay close attention to the details and ask you many questions.  You will understand not only how much she knows about brain injury, but you will first realize how much she cares.  We treat our office staff with respect and provide them with education and knowledge, so they in turn are able to provide you with exceptional service.

This sentiment was expressed by a client in a letter to our office:

“ Jayne genuinely and skillfully expresses kindness, patience, respect, and empathy.  Through her sensitivity and understand, she has provided me with a listening ear, words of encouragement and often times emails of inspirational stories.   On many occasions, it has been Jayne’s caring nature that has given me the strength to continue on during very difficult times.”

Jayne just is different.  It will only take one phone call to know that.  She has dedicated herself to learning about brain injury as much as I have. What’s more, she listens and believes you when you tell her about your life now.
You are not “just a case” in our office.  We treat each case individually and give you our full dedication.

We promise to be accessible and available to you.   If you would like an experienced, caring, honest, knowledgeable, trustworthy brain injury attorney,  call Brain Injury Law Group, S.C. at  1-800-992-9447.

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Help with Brain Injury Compensation Cases

---

Attorney Gordon Johnson 
Past Chair Traumatic Brain Injury Litigation Group, American Association of Justice
g@gordonjohnson.com :: 800-992-9447

---

Lies, Logs, and Audio Recordings

I'm not going to be so petty as to name names, but a local business attempted to inform me of an appointment they had changed. When I called to confirm the original time of the appointment, I was told it would not work. Then they said they had called me and changed the appointment. I don't know if they are attempting to take advantage of my memory difficulties or not, but because of my memory difficulties, I have a recording of the their false claim, AND a complete log of every incoming and outgoing phone call between my number and theirs. I am annoyed when people lie to me. I know it happens often. I know I have been guilty of saying things that were not true, usually either exaggerations or just false memories created by my disability, but I try to be up-front and honest with people as much as I possibly can be. The one area I struggle with is when others have told me something in confidence, and I don't cover well when questioned. So I have plenty of empathy for why a person might say something false, but when I'm already struggling all the time to work around amnesia, depending on tools such as phone logs, journal notes, and other artificial means to keep in sync with "reality," it disturbs me when I know someone has lied. That's all I'm going to say. I hope my message gets heard by the right people, and I hope I have not unduly hurt any feelings in the process.

Awareness

Taken just before my daughter's wedding. I missed the wedding.

I could not stay awake. I was rushed to the hospital shortly after

speaking the words, "...her mother and I do," as I gave my daughter

away. At least I'll be able to see the video of her wedding.

I am convinced that one of the main keys to a better memory is vigilant "awareness" 24/7. That level of awareness is difficult to maintain. I created this post to record my experiences after a phone call from my Neuropsychologist, who had to cut short his testing session the other day because his session is designed to take four hours, but my mental focus "window" is only about two hours between naps. 

At my test, I started out performing better that most healthy people, but quickly crashed until the doctor said it was pointless to continue. 

That happened at about the half-way point of the four-hour test. I was beginning to have difficulty speaking, I had switched from solving equations mathematically, to solving them using visual proportions, which meant my answers were in the ball park, but were no longer precise. I made the switch, because I could feel that part of my brain shutting down. By the time he called off the rest of the testing session, I had to take a nap before Audra and I could head home. 

Now he wants to start the test over, asking me to once again allow four hours for the test. He scheduled the test earlier in the day, which means I have to make arrangements to ensure Jonathan knows he must walk to work that day, or get a ride. Audra will need to cancel any plans she has to come with me, because I cannot drive out of town alone. 

Then I noticed the new appointment was scheduled one day AFTER my Social Security Disability hearing. One of the reasons I needed this testing was to provide evidence for that hearing. So, having been reminded of the disability hearing, I looked at my calendar entry for the hearing, realized it is in Central time, while I live in the Eastern time zone. The Lawyer wants to meet with me an hour before the hearing. I was pretty sure that meant everything would be an hour later by my watch than my appointment with the lawyer and the court time, especially since the Lawyer commented our meeting would be about an hour before the court appointment. (This is an all-day hearing in which many cases will be heard. What are the chances I will even be conscious during my hearing?)

So.... I looked up the time zone information and verified I was correct that I would have an extra hour to get to the hearing. I tried to look up directions to the Court house to make sure my planning was allowing enough time. I have no recollection of the following events. The next thing I knew, I was seeing a message on my screen thanking me for choosing to install the "White Cloud" toolbar. (WHERE DID THAT COME FROM!!!?) I made sure my anti-malware was on-the-job. It prevented the program from writing to the registry, and prevented the program from creating an auto-start, but the toolbar had already appeared in Chrome. I immediately used Chrome's tools to disable the tool bar and delete it. Then I searched and found two programs with the name "White Smoke." Now I'm waiting for another program to search my registry for any references to the white smoke program folder....

...and I still haven't informed Audra that I just ruined at least two of her days next week, or told Jonathan he will need rides to work two days next week...

I sure hope I remember to do that. I'm getting very tired. 

Audra just scolded me for not feeding the cat today. He should be fed shortly after I get up. I answered, but it can't be that late. I'm not awake yet....

Oh yes. I still need to get those directions....

Creative Giving 101

This is a class made for me! I think about this topic all the time, because I believe giving is important to any successful life, yet so often it feels impossible. 

In the past it was medical debt that made things impossible. 

Then it was the intensity of being a full-time student, and trying to get enough exercise in that I would be as healthy physically as I was becoming mentally. 

Then THAT plan fell apart (for the time being) when a driver high on marijuana decided the BEST way to cross an intersection where he had a stop sign and I had the right-of-way, was to floor the gas so he could be through the intersection before I got there. I still have mixed feelings about that kid. I'm alive because he chose to stay with me and call for an ambulance, and he paid dearly for making that choice: he was caught driving while intoxicated, and spent six months in jail because of it. When the prosecutor asked what I wanted. I said, "use your best judgement. He disabled me, because he broke the law, and I will be affected for life by what he did; but you caught him, because he was responsible enough to stick around until I got help, and I'm probably alive because he made that sacrifice. I won't press for any more punishment than you think is appropriate." (I actually felt six months was harsh, but knowing my own judgment was compromised by what he did to me, I did not consider myself to be in a position to say what I thought.)

Now, as I continue to fight to get disability compensation, and at the same time, fight to find ways not to need it, I honestly don't know how I can give right now.

I don't have any money that I can truly call my own. Whatever I would give, was given to me. I have no income, and no possibility of earning an income any time soon.

On the other hand, my ability to earn an income is limited only by the unpredictable nature of my current state. I have many moments when I am more capable than many people, but those moments are followed by mental exhaustion that is so extreme that I am a danger to myself if I don't get rest immediately, and while those naps can happen in less than a half hour sometimes, they often monopolize the rest of the day. In addition, I make mistakes I did not used to make. So even when I exhaust myself mentally, I still have to double-check everything, or the effort will have been meaningless. I have ALMOST no event memory. I cannot be sure of remembering anything unless I write it down, and follow through with making sure that what I have written down has been indexed in such a way that I will be able to find it again. Then I have to write a little bit about every moment of every day, or by the next day, I will have no clue what I did the previous day. Worse, I fail to keep those notes consistently. I'd say at best I create half the notes I should (due to mental fatigue), and then try to recreate the other half after the fact, based on receipts and Facebook notes I have written. That is how I construct my memories that enable me to function in a somewhat "normal" way from day to day.

So, given all that I am experiencing, how can I help others? How can I give?

Right now, I just hope that posts like this one are helpful and inspirational to others. I have big plans for the future, based on the assumption that I will eventually learn ways to compensate better for my deficiencies. I intend to contribute to a network of online resources for other survivors of brain injury. I have drawn so many mind-maps describing how to keep a well-documented library of quality research material, with citations in a database for easy retrieval. I also want to catalog the common false conceptions that cause people to waste time so I can help them avoid those dead ends, some of which ensnared me. I want to present that material in a way that a variety of people in a variety of circumstances can use it. I want to cater to brain-injured people who need pictures and videos. I want to cater to their families and caretakers. I want to summarize important studies in plain language that any adult can understand. I want to summarize the summaries at a kindergarten level. Then I want to take away all the words and just show pictures that illustrate the ideas, and I want to do it over and over with each article. I want to give other brain-injured people the opportunity to contribute to this effort also, because we all need to give as much as we need to receive. Otherwise, it would be like inhaling without ever exhaling. It is just as deadly to receive without giving (disabled or not).

Pray about these thoughts, as I pray about signing up for this class.

It is difficult for me to make commitments right now, because I know with each commitment I make, that I will break more of them than I keep. I'll feel bad about it when it happens, but it's a fact of life for me right now. How do I do this?