Dear Healthcare Provider: A Letter from a Survivor

The below letter was written by a brain injury survivor through the Acquired Brain Injury (ABI) Program at the San Diego Community College District and the following excerpt was provided by Heike Kessler-Heiberg, M.A., SLP-CCC, associate professor of the program.

Dear Doctor,

Since my injury, I have become aware that I don’t always pick up on subtle social cues and facial expressions. I tend to take words literally, not understanding a joke or second meaning.I don’t remember information. I can understand your explanation, but may not later remember it.

My goal is to work with you, with a positive outlook leading to a positive outcome. I work best with communication that is direct, with simple clear instructions. Written instruction is important!

It is very helpful that speaking is calm and slow, with pauses to allow me to process the information. Fast-talking and long explanations can be overwhelming for me.

I appreciate gentle honesty, even when there is bad news. I appreciate it when you, as my partner, always hold out hope. I understand that this medical relationship is a process. Writing this letter is a big risk for me, but I have taken it because you have indicated a willingness to work with me.

Thank you so much.

As brain injury specialists, we are called upon not only to advocate for our clients, but to also assist them in becoming their own best advocate. I’ve had the privilege to develop and teach classes through the San Diego Community College District that provide a continuum of services that integrates the multiple needs of adults with brain injuries via a holistic, student-centered curriculum which covers cognitive retraining, personal development, academics, creativity development, coping strategies, communication skills, vocational/volunteer exploration, and, the topic of this article, self-advocacy.

Our class definition of self-advocacy is the process of actively developing certain skills or competencies to effectively support and promote a cause or idea on one’s own behalf while preserving one’s dignity. The class begins with a self-assessment, followed by in-depth discussion and exercises focusing on skills within the areas of informational skills, intrapersonal skills and interpersonal skills.

A significant portion of the class is devoted to scripting as we examine numerous “myths” about brain injury, such as “You look fine, therefore you are fine” or “You should just try harder.” The students also develop and practice responses to the typical questions survivors get, such as “When are you going to be better?” “When will your memory come back?” or “Why aren’t you back at school/work?” The goal is to develop scripts for various situations and questions to increase the survivor’s level of comfort, confidence and automaticity with the words. Scripting is also introduced as a way to organize one’s thoughts and concerns before important meetings or appointments.

The above article highlights one example of a student who was having trouble understanding and relating to her neurologist. Through our class, she wrote and presented this physician with this letter describing her challenges. These were feelings and thoughts she was having trouble expressing verbally, and the letter ended up greatly improving their doctor-patient relationship. We now use a copy of this letter as a handout for the medical journals. 

It is exciting to see how many of our students are able to effectively integrate and apply these advocacy strategies and I encourage all healthcare providers to seek out or develop self-advocacy programming for those they serve.

To learn more about San Diego Community College District’s Continuing Education ABI Programs, click here. For more details about San Diego Community College District’s Continuing Education ABI Advocacy Class, click here.

About the Author:

Heike Kessler-Heiberg, M.A., SLP-CCC, is a received a bachelor’s degree in Linguistics from Georgetown University and a master’s degree in Speech-Language Pathology from the George Washington University in 1982. She is currently an associate professor at the San Diego Community College District Continuing Education’s ABI Program. She has developed and taught many courses, including Memory Strategies, Brain Anatomy and Function, Book Club, Advocacy, Drawing, Study Skills, Scripting Out What You Want To Say, and Aphasia Workshop, among others. The course curriculum for the Book Club class led to receiving the 2007 Innovation of the Year award from The League for Innovation in Community Colleges. Prior to her teaching position, she worked as a speech-language pathologist in Orange County and San Diego, providing group and individual therapy for adults with neurogenic communication disorders in a variety of settings, including intensive care, in-patient and out-patient rehab, adult day programs, skilled nursing facilities, private practice, home health, and day treatment programs – and was the first therapist to join and help develop the Sharp Hospital’s “Day Treatment Program.” She also served as a consultant for joint research project between the University of California, San Diego and Northwestern University on the neural correlates of language recovery in aphasia. Since joining the ABI Program in 1989, she feels fully invested and versed in the “continuum” of care for brain injury.

Heike emphasizes a functional, practical, and holistic approach to teach compensatory strategies. Her goal is always to help brain injury survivors achieve their goals, whether it be going back to school, reading their first book since injury, or creating the ultimate Day Planner.