Lauren Slack likes to say, “If you’ve seen one brain injury…then you’ve seen one brain injury.” Lauren is one of ten brain injury survivors who recently participated in the RISE (Rising together In Search of Excellence) program at Arapahoe Community College-Littleton. “I would like to think that, that makes me unique,” she adds with a smile. “I’m special. For that matter, all those living with brain injuries are as equally exceptional.” Rafael Zamora, another brain injury survivor in the RISE program, would have to agree. “There are so many different types of injuries,” Zamora mentions. “What we all have in common, though, is that we all have the choice to fold or fight. And everyone that has been part of this program has chosen to not back down. We’re trying to make something better of our situations."
This past fall semester, the RISE program at Arapahoe Community College has helped those living with brain injuries continue shifting their “situations” by applying the teachings of a self-advocacy course titled SAIL – Self Advocacy for Independent Living. This course was originally developed for Craig Hospital, one of the nation’s top ten rehabilitation facilities for brain injury. In fact, Lenny Hawley (LCSW), the chief developer of the SAIL program, led the RISE program in its inaugural outing. The findings of a five-year study at Craig Hospital concluded that “people living with brain injuries, even many years after their injury, can improve their self-confidence and their belief that they can be advocates for themselves.” Surveys for the SAIL course at ACC showed similar results as well as an improvement in overall wellness, organization, communication, and brain-injury-related knowledge.
These findings came as no surprise to both Lauren and Rafael as their fall semester came to a close during the first week in December. It was at that time that we were able to sit down with the two to process their time in the program. Here are excerpts from that conversation:
What do you want people to understand about brain injury?
Rafael: Brain injury takes away a piece of your independence. Socially, it’s always awkward. People don’t know that there’s something wrong with you. I used to live like a bag in the wind. I was like…free, you know? I am not as independent as I used to be.
Lauren: TBI (Traumatic Brain Injury) survivors have the loneliest job in the world. It’s isolating because people can’t see your injury so you feel stuck in your own struggles. Don’t get me wrong, my brain…the brain is so fascinating. But there are times when it feels like it just stops working altogether. My thoughts…my emotions…they just stop sometimes. All my ADLs (Activities of Daily Living) (e.g., eating, dressing, functional mobility) take forever because of that. People with brain injuries need a little more time just to get through the “easy” things.
What surprised you about your experience in the class?
Lauren: (grinning) I was surprised that I tried something new. It’s so hard to get out of your comfort zone, but it’s so important. I didn’t think that I would get so comfortable with others. It actually happened really quickly, though! Also, I am excited to use some of the strategies that came from the class. I use P.A.R. all the time…every day! I shared it with my family so they know how to Pause Assess and Respond. It has helped with communication.
Rafael: I realize how much I’m missing. If I wasn’t in this course, then I wouldn’t have had the vision to understand that. I learned that one of my goals is that I need to continue focusing on organization. (takes a deep breath) What we’re doing right here is a big deal. What would it be like if someone helped you see yourself for what you are and what you can do? That really opened my eyes!
Why do you think a program like this is needed in the brain injury community?
Lauren: It encourages [brain injury] survivors to be social and meet each other and set goals. It reminds us that we’re not alone. You get to learn from others. It’s more than just a support group.
Rafael: To make people more human again. I mean that. We get to feel more human. We get a rare chance to be more social. It’s helped me communicate with others and respect other people’s perspectives. You don’t really get that when you’re just working one on one with a therapist.
What was it like taking this course on a college campus?
Rafael: It reinforces my independence. It’s weird because you get used to people looking at you with pity when they know you have a brain injury. Here…here people look at me like I’m a student. Like I can do anything. I’m bigger than my brain injury when I get to be on campus.
Lauren: It was exciting and so interesting! I graduated in 2014, so it’s been 6 ½ years since I was on a college campus. The hustle and bustle was thrilling. I didn’t realize how much I missed that. I got to get that back in my life. I’m a big proponent of lifetime learning so I want to keep inviting classroom learning experiences into my life.
What has improved because of this course?
Lauren: I’m less reactive for sure. I came into this class knowing that I needed to focus on controlling my emotions. Now, I pause and give myself time to think before I react. There’s a difference between reacting and responding, and it only takes a split second before an interaction spirals into something negative. It was great that this class was a shared experience because my new friends were able to relate to how difficult it can be to modify your own harmful behaviors. I also chose to move upstairs in my parents’ home to get a feel for what it would be like to move out one day. I actually decided to consider a supported living center after talking to one of my new friends in class. She gave me so much information that only a survivor could offer. Even though class has ended, I’m not going to stop working on that long-term goal.
Rafael: My confidence. Definitely my confidence. (laughs) It’s a big deal that I was able to get my butt in that classroom seat every Tuesday! To see my classmates’ positive reaction…that proved to me that I can do things with some consistency, you know? As far as the future, I know that I can advocate for myself. I can be independent for more things than I give myself credit for. It’s also interesting that I know that I need to be more social. You know, we’re not robots! I learned that it really helps your wellness when you get more chances to be with others…to share your in your experiences…to help each other out.
Why would you recommend this course to others?
Rafael: It’s pretty obvious. Anyone with a brain injury should take this class because we have to help each other out. We get to teach each other and learn from each other. We’re different now. I see life differently now. I know how to take a more positive route in life.
Lauren: Just for nothing else, the goal-setting aspect. We worked on that so much in class. Brain injury survivors need to know how to be better self-advocates because others aren’t always going to step in and be that for you.
We were so fortunate to share in these final, waning moments with both Lauren and Rafael as they began to prepare for the upcoming holiday season. The RISE program wishes them all the best as they continue to move ever closer to achieving their long-term goals. We look forward to future updates from them and our entire RISE family!
With the momentum of a successful semester, the RISE program is excited to announce the addition of a new course this upcoming spring! Life Management Skills After Brain Injury will complement SAIL as part of the RISE course catalogue. Both courses have the start date of Tuesday, February 22, so begin the application process as soon as possible as we anticipate the courses filling up quickly. For more information about the RISE program, please visit us online.
Lenore Hawley, MSSW, LCSW; Clare Morey, MA, CCC-SLP; Mitch Sevigny, MS; Jessica Ketchum, PhD; Grahame Simpson, PhD; Cynthia Harrison-Felix, PhD; Candace Tefertiller, PhD. Enhancing Self-Advocacy after Traumatic Brain Injury: A Randomized Controlled Trial, Journal of Head Trauma Rehabilitation, 2021