Topic: Memory - Remembering What I Read

Question:

My injury was a year ago and I have made a lot of progress. The one area I continue to have difficulty with is my memory, particularly when I read. I have most of the basics under control, but I was in my second year of college at the time of my accident and want to go back to school (I have always been a good student), and reading is difficult.

Some of the professionals I have been talking to (my doctor and my vocational counselor, in particular) are not exactly encouraging me to go back to school (they don't want me to be disappointed, I guess). They tell me that the results of my neuropscholgogical tests are so poor that I will not likely be successful.

But before I give up on my dreams and "learn a trade" I want to try to go back to school. My dream is to be a psychologist and work with children. My counselor suggested that I start by taking one class and that is what I'm doing. The problem is that nothing STICKS! I read things over and over (and over again), but it doesn't help. They say that repetition is the key, but for me it's not working. What else can I try (besides giving up and accepting defeat)?

There is no way I can possibly get an advanced degree if I can't retain basic facts in Sophomore-level college classes. Thanks for any suggestions you may have.

Andy K. in Los Angeles

Dear Andy,

You are not alone! Many (most) of us who have brain injury, have some level of difficulty retaining what we read. The good news is that there are strategies for successfully dealing with this! Even better news is that many of us with moderate (and even severe) brain injury have made it through school some with advanced degrees!

Have you talked to your student disabilities office about getting some help? Tweaking some basic study skills often work for those of us with brain injury -- particularly when we understand why we may not be retaining what we read.

You are also entitled to a variety of "reasonable accommodations" under the ADA (they can range from special testing arrangements to using notes during exams even a computer). If you structure your request appropriately, and provide the college with the kind of documentation they need, you should be able to help them understand that assistive devices like notes (or even a computer) can help you with the information retrieval process something your injured brain does not do on it's own any longer. The concept is that of a "cognitive wheelchair."

De-coding vs. "remembering"
I am going to assume that you are able to decode what you read. By this I mean, when you read a word or a sentence, you get meaning. Sometimes, following a brain injury, a person cannot decode written language (which is the first building block to retaining what we read. If you have problem decoding written language, the rest of this message will make sense after you have re-learned how to decode language.

Retaining sequences
After a brain injury, many of us have difficulty (or find it impossible) to retain more than one or two "steps." This applies to instructions and directions (as you probably already know). But it also applies to higher-level skills, such as making decisions, solving problems and retaining what we read or are told. Once we know that keeping track of steps (or sequences) is a core issue, we can apply strategies to compensate for this lost ability.

Early in my recovery, I realized I could not retain what I read -- whether I was reading an article in the newspaper, a letter from someone, or a chapter from a book. This was very frustrating, particularly since getting back to my line of work depended on my ability to retain what I read.

Based on many of the principles of compensation I learned in rehab ("write stuff down," "get organized," "compensate visually," "do things in steps," etc.), I developed a reading method that worked for me. It can be summarized like this:

Step #1: Read the first paragraph (of an article, book chapter, etc.)
Step #2: Write a "Summary Statement" (to solidify the main point in your mind)
Step #3: Read the Summary Statement for Paragraph #1 before reading next
paragraph
Step #4: Read Paragraph #2
Step #5: Write a "Summary Statement" for the second paragraph
Step #6: Read Summary Statements #1 and #2 before reading next paragraph
Step #7: Read Paragraph #3 and write a "Summary Statement" for it
Step #8: Read Summary Statements #1, #2 and #3 before reading next paragraph

Keep doing this, until you get to the end of the article or chapter. Then organize all the summary statements on paper, until you can write a "Summary Statement" for the entire chapter, using all the previously-written Summary Statements for the paragraph.

Time-consuming, effort-ful method
This looks like a time-consuming and labor-intensive method. It is! I sometimes hear that it's "too" time-consuming and effort-ful. .

But it works! And it's far less frustrating than the equally time-consuming, frustrating and less effective approach of re-reading material dozens of times. This method works for reading newspaper and magazine articles, e-mail messages, letters, college textbooks and more. Once you get the hang of it and have practiced it lots of times, it can become automatic and more comfortable.

My response to the argument that this method is too effort-ful is that it all depends on what an individual's goals and objectives are. If you want to retain what you read, following brain-injury related memory impairment, this is one method that is known to work. The options would seem to be to find another, possibly less effort-ful method, or give up the goal.

Why this method works
This method works the same way writing steps for executing other processes (for example, following instructions and directions). When the brain does not hold onto steps (or ideas, in the case of reading), we can compensate for this organic deficit, by writing things down in a way our brains can "see" and use the information.

For example, I can log onto the Internet (without remembering the steps) because I can write down the steps and then look at them to see what I need to do (I use something called a "STEPS" card). I can follow steps I see, even if they are not accessible in my head.

Same thing with reading. If I can read and understand a paragraph, and write down the main point, I can continue to read with understanding as long as I can see and review all the previous points on paper. We are able to DO multi-step tasks, including tasks related to reading -- without relying on remembering them. We can do this by writing the steps down in such a way that we can find and read them when we need them.

Example
If you want to see an example of how this reading method works with actual college-level materials, please click on the following URL. This is from an actual lesson I teach to college students who are re-learning how to retain what they read:
http://www.brainbook.com/brainbook/lessons/ws_lesson1.shtml

Obtaining an advanced degree
Please do not let others discourage you from trying to accomplish this! I know a number of persons with brain injury who have gone on to obtain advanced degrees. Some have had severe injuries. Was it easy? Of course not! Did it take a while? In most cases, yes, much longer than it took others who did not have brain injury. Did they need to use compensatory strategies? Of course. Did they make use of "reasonable accommodations" per the ADA. Oftentimes.

Professionals with whom we may work are often tempted to discourage those of us with moderate and severe brain injury from trying to aim "too high." They do this for a variety of reasons. Some actually believe they are doing us a kindness by helping us avoid disappointment and frustration. Some feel they know best because they have not seen many (any) success stories and hence feel obligated to help us have "reasonable expectations."

Regardless of their motivation, the fact of the matter is that some of us who have had brain injury are able to learn sufficient compensations to be successful returning to high-level work and college. In my view, it's a matter of knowing how to combine all the success factors and sticking with a long-term plan! The "factors" include an ability to learn compensation strategies, and ability to build on solid (new) foundations, willingness to accept progress in small steps, and taking our time (i.e., give ourselves appropriate "BI-Time" to accomplish our objectives).

Networking with successful peers
You might want to start networking with successful peers to find out how they achieved their objectives. You will learn that it took some people 10 years to get their degrees (or advanced degrees). Others can share with you how videotaping classes helped them get through college. Others will share with you how they were granted use of their laptop computers during tests. Others will share with you how they learned "concepts" or dealt with "grey-area thinking" (oftentimes neither of these come easily following a brain injury).

You can start network with successful peers by talking to them on e-mail support and discussion lists. The one I facilitate is TBI-WORKING. There are a number of successful college students on this list too. You can find out more about TBI-WORKING and other support and discussion lists by going to:
http://www.tbimo.org/groups.asp#internet

The down-side to neuropsychologica testing
Most neuropsycholgical testing assesses what I call "brain function in the raw," meaning, how one's brain functions without the use of assistive tools or skills. These test do not evaluate how well a person will function if given the opportunity to learn compensatory strategies and use one or more assistive devices in the course of going to school or work.

If the conclusion is that "ABC person's brain is not working well, hence XYZ employment or advanced schooling is not recommended," this would be comparable to evaluating a person with 95% hearing impairment, and concluding that they cannot hear well enough to take classes or work in an office if use of a phone is required.

In the realm of hearing impairment, we all accept the fact that assistive devices and assistive strategies may be required for a person with severe hearing impairment to compensate at work or at school. We are not that "far along" if we are talking about brain injury-related deficits. Much prejudice remains in the realm of brain injury.

Work evaluations
People who have had work assessments/evaluations, in the absence of obtaining compensatory skills training, often have the same experience. It's easy to assess a person with brain injury in a work setting, and conclude they are not "capable" of doing XYZ job if they have not been given appropriate tools and skills to do the job.

In closing
Please do not give up until you have talked successful, accomplished, brain-injured peers who have battled back. If you are having difficulty obtaining vocational rehabilitation services, be sure to network with successful peers who have had experience with vocational rehabilitation. And PLEASE, do not give up!

As you experience classes (or work experiences), you will gain a sense for how far you can get. If you are not able to learn compensatory strategies, you will not need to be told by others that a Masters level degree is out of question for you. Why? Because if you cannot pass exams even with all the strategies and compensations in the universe, it's just not in the cards, as they say.

My feeling is that you are wise NOT to let others determine your future for you, before you make an effort. The key is finding out what will help you be successful. After all, those of us with brain injury do things differently. Your challenge is to find out what "differently" means first by networking with those of us who have battled back and then to apply what works to your situation.

Good luck and keep in touch. Hope to see you on TBI-WORKING!

Later,
Kathy M.

University of Missouri - Columbia
School of Health Professions
Great Plains RCEP