Long term consequences

Cognitive changes.

All participants experienced persistent cognitive difficulties as a result of their MTBIs.  A majority reported diminished information processing speed.  For instance, Dana avoided group work, because she felt that she needed “extra time to really process the information.”  Gabe, too, stated, “I think things take me longer…than they did for me in the past; longer than…they do for my peers, generally.”

Attention deficits also emerged as challenges for some participants.  For example, Gabe noted, “I will get distracted…when I’m doing research on the Internet.  I’m supposed to be looking up journals, [and] like I’ll just subconsciously go to Facebook or something.” Even Mason, who attributed the majority of his academic challenges to his transition from high school to college, acknowledged that he could “maybe get sidetracked and maybe that’s [an] attention thing.”

Several participants spoke about memory difficulties following their MTBIs.  For example, Molly commented, “After my head injury, I would just… not…encode things.  So it was like the forgetfulness was still there but was just a little bit more.”  Dana echoed this sentiment, saying, “Classroom settings, sometimes they can just be a challenge….You have to go in there, you have to listen, you have to try to retain all this information.  A lot of times writing notes is just like, ‘Okay, I wrote them but what did we talk about?’”  Gabe, too, struggled with issues related to memory, reflecting, “I used to have this passive, like latent memory of the things that I did over…a window of five or six days.  I could say immediately what I did two days ago, as where after the injury,…I haven’t been able to do that.  I have to actively sit down and think about it, and the day, instead of being a singular day, sometimes seems like it’s made up of several conjoined parts.”

Physical changes. The participants experienced various physical changes resulting from their injuries. For example, Mason sustained an arm injury that prevented him from resuming his athletic endeavors, and Molly experienced vision changes that interfered with her ability to track written words; Gabe and Julie reported persistent headaches.

A majority of the participants also mentioned sleep cycle disturbances.  Dana remarked, “I would say the biggest thing would be sleep.  I wasn’t sleeping well….Or if I did get to sleep, it was like my mind just wasn’t ready to rest.”  Gabe, too, reported difficulty getting his mind to rest, commenting, “I also develop…this kind of mania at night where—I think it’s because I’m tired—my…thoughts seem to accelerate.”  Julie’s sleep issues frequently resulted in physical and academic consequences.  As she put it, “It’s like, something’s gotta give there….This week was bad, because I stayed up way too late like for the last two weekends, so my brain’s like, ‘You really can’t keep doing this,’ and I missed class because I slept through the alarm.” 

Mental and physical fatigue were also common participant complaints.  For example, Molly reported, “The second year I had it [the MTBI],…things like reading an article…made me really tired….I would read something, and I would be like, ‘I need to take a nap.’”  Julie’s mental and physical fatigue frequently affected her emotional state.  For instance, she described a difficult day saying, “Finally I just wanted to burst into tears, because I just was like, ‘I’m tired.’ …I turn into a two-year-old—honestly—where I’m like, ‘I don’t wanna.”  I get really whiney and really tired, and
I space really bad.”

Three of the participants also reported less stamina for the rigors of college than students without disabilities.  Julie remarked, “I think I’m Wonder Woman, but I’m not.  I think that’s the biggest thing, is just like trying to do everything, and I can’t.”  She went on to say, “I feel like they’re [peers] able to balance everything out and juggle it more.”  Gabe too remarked, “I mean I have a much lower threshold for stress and work which…it’s all relative to other people.’’

Social-emotional change.  Social and emotional changes were evident for all participants, but they were expressed in unique ways.  Gabe, for example, struggled with negative emotions.  He reflected, “I’ve become a much more angry person.…I…tend to be very caustic in critiques of other people’s work.”  Molly, too, struggled to interact with others, commenting, “[I] tend to be emotionally expressive, so…like if I’m bored or I’m kind of disgusted with something, it’s hard for me to hide it.  And having a head injury just makes all that worse.” 

In contrast, Julie had many friends and interacted well with others.  However, she struggled with an underlying fear of rejection fostered by her negative experience with her friends at the time of her injury.  As she put it, “I overbook myself socially a lot,…or say yes to something when I know I have a paper due.  But it’s like I don’t wanna be left out, because I don’t want them [peers] to stop being my friends.”  She also struggled with emotional lability commenting, “I’ve always been emotional, but, like since my accident, like someone can do something, and I’ll just start crying.  There is no reason for me to cry, and then I start focusing more on like emotional stuff.  And it totally affects my school stuff way more than it should.”  Dana’s challenges with social interaction stemmed from her post-injury difficulties organizing and expressing her thoughts.  For instance, she stated that before her BI she could, “engage in… debated conversations,” but that after the accident, she avoided them.  As a result, she became “a listener, because it just…becomes too much.”  Even Mason reported he had become more aware of the potential negative outcomes of risk-taking which affected his behavior during social situations with peers.

Academic.  One of the key academic changes in the college experiences of the participants revolved around the time and effort required to complete coursework.  For example, Mason commented, “If, for our test, I have to memorize so many things, I’d have to start probably earlier,” and Gabe reported that the writing process took longer for him than for his peers.  Julie, too, struggled, reflecting, “I think I may need an hour to do stuff, but it really takes me three hours to do it, and I didn’t comprehend that.”  Dana, on the other hand, recognized her decreased information processing speed and compensated by spending extra time to “write everything down and go over things more than once.”

Some of the participants also noted difficulties with task initiation.  For example, Molly commented that, prior to her injury, she was “really, really concerned” if she turned a paper in late, but, after her injury, she was unconcerned about submitting work in a timely fashion.  She commented, “There are some days when I do not do any work at all....I know in grad school, in order to be productive, you need to get something done every day.  But there are some days where...I’ll just be sitting there in my office.”  Gabe echoed this sentiment, saying “I never had…the difficulty I have now in approaching my work.  [It is]…like a mental obstacle to get started on it.” 

The participants responded to their academic challenges in different ways.  Julie changed to a less rigorous major.  Dana enrolled part time, and she and Mason both routinely used SSD accommodations. Molly moved to a different department where she felt the professors understood the academic implications of her MTBI, and Gabe purposely enrolled in less demanding credits.  The results of these self-initiated modifications varied.  Mason transitioned off academic probation after beginning to receive SSD services, but Dana continued to struggle with one of her courses.  Julie reported increased satisfaction and academic performance in her new major; whereas, Molly and Gabe continued to report no change in their performance, which they described as comparable to that of their peers.

Accommodations.  The participants identified registration with the SSD office and/or access to accommodations as a factor distinguishing their college experiences from those of their peers without disabilities. For example, Mason reported he routinely approached professors about his accommodations and Dana stated, “It is a challenge I think for me, not only being older but, with…a lot of the professors obviously I have to go to them and tell them,…‘Okay,…I’m registered with the SSD office.’”  Julie, too, felt the process added an extra layer of complexity commenting that it was “hard finding…a balance….and…learning how to take…advantage of them [resources].”

Molly and Gabe saw their need for accommoda tions as setting them apart from their peers without disabilities.  Molly, for instance, commented that the professors in her first program routinely gave her easier research responsibilities like literature reviews instead of more complex tasks like data analysis.  In her words it was “…like not getting the same training.” In contrast, Gabe’s concerns revolved around using extended time on a standardized entrance exam.  As he put it, “I was looking into extended time…and I guess they qualify your school in some way if you get [it].  You just get an asterisk attached to it [the result]. So I don’t know what kind of implication that would have in terms of [an] admission committee.”

Advocacy. The participants acknowledged the need for self-advocacy as they sought services and support related to their MTBIs from professors.  For Mason and Gabe, the process appeared to be relatively neutral.  Gabe reported he rarely discussed his MTBI with individuals in his department, but that the chair of the department, “might know about it [the brain injury], because it was included in my application materials.”  He went on to say, “We might have talked about it once or twice, but it hasn’t been the consequence of…any course work.”  Mason, on the other hand, reported freely talking with a number of his professors about his academic needs.  In contrast, Julie’s experience was stressful.  She reported difficulty getting “the courage to go talk to a professor and tell him like, ‘Hey I need extra time on this.’”  Even Dana, who relied heavily on academic accommodations, acknowledged that she found approaching her professors challenging.  Interestingly, although Molly expressed distress related to her need for accommodations, she reported that her self-advocacy skills with professors and others had improved over time.

The participants readily acknowledged the presence of personal, social, and environmental influences that colored their perceptions about their college experiences.  Some of these influences were positive, and others were distinctly negative.

Self-determinism.  The participants identified their personal resolve, beliefs, and actions as positively affecting their perceptions of their experiences as college students.  Dana, for example, pursued academic success by honing her note-taking skills and becoming “more organized” to meet her academic challenges; whereas, Mason reported spending more time planning commenting, “[I] try and make sure I…do whatever I can to succeed.”

Julie’s self-determinism was rooted in her desire to demonstrate her intelligence and academic worth. She recalled, “My freshman year [of high school], I remember the principal of our high school told me that…‘You need to understand that you’re never going to college.’….So he’s a big motivator in the fact that I’m gonna prove him wrong, and I’m gonna graduate.”  Similarly, Molly’s decision to enroll in a complex statistical modeling course stemmed from her desire to prove to her professors that she was capable of completing challenging post-graduate work.  Even Gabe reported being motivated to exceed the expectations of his professors by producing noteworthy academic projects.

Support from family and peers.  Each of the participants listed some type of family and/or peer support as positively affecting their college experience.  Support from mothers topped the list for four of the five participants.  Mason, for instance, credited his mother with helping him receive accommodation services, and Molly commented, “My mom…is like my biggest advocate….I think I probably got better care than most people, because my mother made sure of it.”  Julie, too, reflected, “She’s very helpful and supportive still, like when I’m stressed,…she’ll come over at two o’clock in the morning if I need her to.”

Gabe acknowledged the role of his parents but felt that peers, especially members of the opposite sex, strongly contributed to his positive experiences.  He related that both his former girlfriend and last female roommate had provided support and structure for his life.  Dana, too, reported she relied heavily on individuals outside of her immediate social circle because her parents and closest friend felt she was “fine.” Specifically, she reported, “With a couple of students that…I feel comfortable with,…I can ask them, ‘Well what…are we doing?  What’s going on?’ And you know they’ll just [say], ‘This is what we’re doing.’”

Educator support.  The participants defined educational support in different ways.  Julie  reported her current college experience was positively affected by educational rehabilitation and supports provided by a teacher and a counselor during her high school education.  She commented that her counselor had helped her “learn how to…think different, and learn how to learn again, ’cause that was the biggest struggle.” Mason appreciated the access to necessary academic supports his postsecondary teachers provided stating, “They’re really helpful, and they understand.  They… meet my accommodations that I need.”  Dana appreciated the professors who were “more structured” and went “by the syllabus.” 

Similarly, Gabe mentioned that his teachers’ class structure and expectations led to his positive views of postsecondary education, because it enabled him to complete course requirements without seeking formal accommodations.  For Molly, the emotional support from her department and her academic mentor related strongly to her positive views of her college experience.  She reflected, “I feel like I can be like, ‘I am really stressed out.  I haven’t gotten a lot of sleep….I don’t feel like I know what I’m doing.’  And I don’t feel like he’s [the mentor] gonna hold that against me.”

Academic accommodations.  The participants identified registration through the SSD office or access to academic accommodations as a positive factor mediating their college experiences.  Mason commented, “I wasn’t [associated with] the Students with Disability [Office] my first year in college.…That year didn’t go well.  I got put on…academic probation.…I registered [with the SSD office], and I got off academic probation after.”  Dana, too, commented, “Just going…[to the SSD office] to take my tests, the pressure…is…almost gone.  If I’ve taken the…test in the [class] room, it’s like an anxiety…I lose my focus.”  Gabe, Julie, and Molly relied on accommodations to a lesser degree but still felt they were helpful. Julie, for instance, commented, “I really don’t have to use my services through SSD…like ever honestly… but this one class I’m like, “No, I need to do that [use accommodations].” 

Injury invisibility.  The primary negative factor reported by all five participants was the perceived invisibility of their MTBIs.  As Gabe put it, “I think… outwardly [I’m] the same in many respects.  I don’t think it’s evident [the MTBI], but it’s very evident to me at times.”  Molly, too, commented, “It’s almost easier to have like a broken leg or to be in a wheelchair, because people can see the obvious limitation. But when you have a brain injury, it’s not always obvious.”  Julie echoed this sentiment reflecting, “If I had some head gear on,…[professors] would probably be like, ‘Oh yeah!  You’re right.  You do have a head injury.’  But because I look and I talk just fine,…they’re always shocked that something could be wrong inside.”

Coursework difficulty.  A number of the challenges the participants faced related directly to coursework expectations.  For instance, Julie stated, “…it [college] was hard…mostly because…I was in a stressful major with a lot of critique…and it…affected me, it would stress me out emotionally too.” Dana, too, reported difficulty meeting postsecondary academic demands commenting, “It’s a challenge, because there is a lot of work, a lot of reading, and then you have to memorize these rocks [for geology class].”  She then described her criminal procedure class saying, “…you have to not necessarily know the definitions, you have to apply, and that’s very challenging for me.”  Mason, on the other hand, struggled with the general transition from high school to college coursework expectations.

Gabe and Molly’s difficulties with coursework performance related directly to their self-perceptions and the expectations of others.  For example, Gabe remarked, “There’s been that looming concern that you need to obviously distinguish yourself,…so… that’s certainly exacerbated the course load that I’ve had.  I could have arranged it so it was more manageable, less stressful on myself.”  Molly, too, commented, “You had the added factor of having a brain injury, but you also had the added factor of ‘Oh great, I’m the only African American in this department.’ So,…I feel…the pressure of …I have to be really, really good at this.”