The SLP Book Club: TBI

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1. “We’re the unknown Americans, the ones no one even wants to know, because they’ve been told they’re supposed to be scared of us and because maybe if they did take the time to get to know us, they might realize that we’re not that bad, maybe even that we’re a lot like them. And who would they hate then?”

   I’m not usually a reader that highlights as I read, but this book caused me to mark a few passages. This is one I want to remember and to set any fear I may be having aside when meeting new people.

   1. Sorry I should have said I was referring to The Book of Unknown Americans. I thought this was a great read, and I love that it is a community read for you. I’m thinking this would be a good choice for my other book club.

   2. There were a lot of great quotes!

2. One more quote from The Book of Unknown Americans: “I wanted her to have the full, long life that every parent promises his or her child by the simple act of bringing that child into the world.”

   This quote struck me as an SLP. I need to remember more frequently that whatever the learning issue is, it is not what the parents dreamt for their child when he/she was born. I think this idea often impacts the parents’ ability to accept the disability, and sometimes causes the parents to move more slowly than I would like towards change.

   1. Yes, that is an AWESOME quote!!

3. This spring, I was part of a TBI evaluation (the first of my career) of a school-aged kiddo. Reading these books during the process was illuminating, fascinating, and heart-breaking. I was amazed and befuddled at the striking similarities and stark differences I witnessed and read about. One thing that was constantly brought to the forefront of my mind, both whIle reading these books and while interacting with the student and their family, was the complicating factor of the invisibility of TBI. This was emphasized again and again in both books and countless times in meetings with the family of the student I worked with. Well-meaning friends and family of the survivor who are not caretakers comment on how they look great, so they must be doing great as well, when really, that is not the case. Far from it. I watched a mother sob in a roomful of professionals, trying to belabor this point. This is, of course, not a new concept and it is applicable to many disabilities. Just something I couldn’t help but come back to during this experience.

   1. I was oddly part of an evaluation. The student had a brain tumor and certainly had brain injury, but because it wasn’t caused by an external blow to the head, we could not evaluate him under TBI. It has been very interesting to see how my district deals with these medical issues.

      1. Poor kid. Hope he gets the help he needs. We had another case, similar to your student’s situation – DNQ for TBI, but was made eligible for OHI, thankfully.

         1. Yes, at the end of the school year we were evaluating him under OHI.

4. I should probably mention that I LOVED both books, so much that I actually bought them. And I NEVER buy books, so that’s saying something!

   Of course I was rooting for Maribel and Major. They were both better people because of their relationship . Maribel began to open up and showed signs of recovering when she was around Major; Major, in turn, learned that appearances can be misleading and had to change some of his stereotypical thinking around Maribel. I would have loved to see them end up together.

   I think Cathy Crimmins is an amazing writer, and the way she chronicled her experiences living with Alan after he sustained his TBI were equal parts horrifying and humbling. I was appalled at the HMO situation – especially with the air taxi!!! I think if I were Cathy, I would have probably just stayed in Canada. Of course, it could have been just as bad in time there, but I couldn’t believe what they were subjected to in trying to get Alan home!

   I would love some follow-up, as this book was published in 2000 – I wonder how Alan is doing now.

   1. So Andrea, your thought about wondering how they are doing now caused me to google her name. And she actually passed away in 2009 from complications after surgery! My heart breaks thinking about the teen daughter and husband that she left behind!

      1. SO sad. I hope they are OK. After everything that family had been through already!

         1. I also googled Cathy and Alan, because I wanted to know how it all turned out. In her obituary, they listed Alan as her former husband. No matter what, they all worked through trauma together.

            1. To make matters worse, in between the time period of the TBI and Cathy Crimmins’ death, Kelly suffered from chronic liver disease. It’s another book “A Mother’s Nightmare: A Heartrending Journey into Near Fatal Childhood Illness”.

   2. I agree! Alan was able to regain a resemblance of his life pre-accident, although so much of it was different. I would love to know how he is doing know!

      1. Me too!

5. I liked both books. For the Unknown American’s I found it interesting that I had written down the same quote to remember from page 182. The issues of immigration and head injury together was a new perspective to consider. I think her parents were very brave. The lack of trust, fear of the unknown, and ease to just cast off these people rather than learning were uncomfortable themes. If made me wonder if I would be any better. Major seemed to bring out the best in Maribel because he put no demands on her. They were good together.

   Mango Princess (I had a hard time finding this book). One thing that stood out to me was despite the thanks given to his SLP at the end of the book, the fact that he worked with an SLP was mentioned very briefly with the line “why does he need speech therapy if he can talk”. Sigh! Why do we always have to justify what we do.
   This book definitely gave me the perspective that we need of the patient’s real needs and keeping treatment funcional for them. And doing what we can for the family.
   I was really saddened to hear Cathy had passed away and also wonder how Alan is doing.
   Regarding the transportation issue, we have a church friend that is trying to get his wife back from out of state by air rather than changing ambulances at every state line. The difficulties of insurance makes no sense.

   1. I like that idea that Major put no demands on Maribel. That is really hard to do!

      Oh my goodness regarding the air issue for your friend! Changing ambulances at ever state line????!!!

6. In the Mango Princess, I felt most uncomfortable/outraged with the heartless Dr. Asshole. May we all remember that the most essential skill we must possess as professionals and as humans is compassion. Compassion is the foundation for patience and true listening.

   1. I felt so horrible for Cathy as she dealt with Dr. Asshole and the HMO. A few months ago we spent several weeks with my grandfather in the ICU. There were several doctors there that would refuse to come talk to us and to explain what was going on. Thankfully we were a family full of SLPs, nurses, and dietitians. When we finally got a doctor who would spend time answering questions and giving us details about what was happening and the plans going forward it was a complete relief. I can only imagine Cathy’s anger and relief as she dealt with the crappy doctors/people and then the doctors/people who showed compassion and simply decent bed side manner.

   2. But I love that Cathy calls it like it is and refuses to work with “the best” because of his awful attitude.

   3. Amen about your comment to remember compassion.

7. Loved Unknown Americans. Both these books are about TBI, but also about how we include/ignore people who are different from ourselves.
   To me, a major turning point for Maribel is when she began to socialize with others.

   CC, once again thank you for organizing the book club!

   1. But I love that Cathy calls it like it is and refuses to work with “the best” because of his awful attitude.

      1. Yes! I have encountered Dr. Assholes personally and professionally, and fight to swap for the caring, humble (as in admitting that they may not have all the answers, but will work their butts off to find possible answers), patient-centric practitioners.

8. I was only able to read Where is the Mango Princess. It amazed me the trials and obstacles that Alan and Cathy had to overcome just to get to the point of some resemblance of their life before the accident. I was angry for Cathy as she dealt with the HMO! I rooted for Alan as he made progress! I wanted to cry for Cathy, Kelly and Alan as they dealt with the aftermath of the accident. This book gave me a new perceptive, not just from the person with brain injury, but from the people who are daily trying to fight for their loved one. I can’t imagine how Kelly or Cathy felt when Alan would yell curse words at them and make awful comments. That poor child had to deal with a lot of emotion and trauma at such an early age, when she couldn’t even fully understand everything that happened to her father. I can’t imagine how it would feel/be to lose all inhabitation and have difficulty managing impulse control. I loved the insider look at dealing with a brain injury, but feel like I gain even more knowledge about the difficulties others have understanding, supporting and caring for the person with a brain injury.

   1. Yes, the yelling of curse words made me want Cathy to just pick up and leave. For her daughter’s sake if nothing else. But then… he is sick and injured and that doesn’t feel fair to do either. Such hard choices!

   2. Yes, it was wretched when Alan couldn’t control his impulses. I can’t imagine how Cathy dealt with it, and how she balanced caring for him and knowing that having him around was exposing her daughter to such awful experiences! What a hard, unfair situation to be in.

   3. I agree…seeing the inner workings of a family dealing with TBI, especially when the person with TBI is a parent gave me a new perspective. I did have to laugh and sigh at the episodes of inappropriate language and behaviors. Have had and do have students with these issues (just made a new social story for keeping pants up and hands off in May for a 17 year old).

9. I loved, loved Where is the Mango Princess, and couldn’t believe I hadn’t heard of it or read it before. The accident was horrific and made me feel sick to my stomach. The whole ordeal moving Alan from Canada to the US was horrific as well, and it is so sad that insurance companies and almighty dollar drive medical services. However, I know that it must have been difficult to be in foreign country without friends, family and a support system. Just being away from home that long would make one weary. I think the move with the plane and how he was transported made me feel the most uncomfortable, but a close second would be kicking Alan out of rehab because he could walk although he still had severe cognitive impairment. I really enjoyed some of the humor, and just the fact that one can find humor in circumstances so devastating. Referring to the first neurosurgeon as Dr. Asshole, the “Joe Cocker” description of his arm, the “Benefits Denial Specialist,” the “dick police” were just a few that made me giggle.

   I did not enjoy the Book of Unknown Americans as much as the Mango Princess, but it was interesting as a look at immigrants’ perspectives coming to America. It was eye opening to realize how much they truly do not understand about our culture and the need for us, as professionals and educators to make sure they understand disabilities and treatments, prognoses, etc. I actually expected it to be more about Maribel and her TBI than it was. I think it was amazing that her parents would make the move to America for her to go to the school she went to. I think there were many obvious signs throughout the book that Maribel was improving such as her ability to understand humor and in general what was going on around her. She also was able to explain her thoughts and feelings more. I think she and Mayor could have had a serious relationship had they remained in the same community until adulthood. I liked how Mayor let Maribel be herself.

   Overall I enjoyed reading both books!

   1. When I started reading “The Book of Unknown Americans”, I did it just because it was an everybody reads book for my county. I had no idea it had anything to do with TBI. But I enjoyed it so much that I wanted to make it part of the book club! 🙂

      1. It was definitely worth the read and I enjoyed it!

   2. I agree, it was nice that Cathy could find some humor in such an awful situation – a healthy coping mechanism! I also found myself laughing at her account of “the dick police” and her other hilarious references.

10. I just finished listening to “The Book of Unknown Americans” yesterday. What a heart-breaker! The guilt that Alma felt, yet kept inside because she didn’t want Arturo to be worried. The courage to leave their beloved Mexico and search for a better education for Maribel. That stinkin’ Garrett & his father who show us just how ignorant some people are…people who forget that somewhere down the line, their families faced the same prejudices and ignorance that the immigrants in the story faced. My heart went out to Mayor, especially at the end of the book. If I had to say one negative thing about the book, it would be that little was said of how Mayor was dealing with it all at the end. He had to feel guilty.
    Even though there are signs in the book that Maribel is getting better, there are still plenty that she’s not as she was before the accident. At the end of the book, her asking Alma about Arturo just broke my heart for both of them.
    I definitely think the relationship between Maribel & Mayor could have developed into something. They started a lovely friendship that could have grown into a lifelong relationship. (Or maybe that’s just the romantic in me wishing it to be so!)
    “Where is the Mango Princess” isn’t available in my library, it isn’t on Thriftbooks yet, and the Amazon prices are more than I like to spend on books, so I haven’t have the chance to read it yet. It is on my list, though!

11. I’m about to start reading “Where is the Mango Princess?”, and I can’t wait with all the great reviews!

    1. I just absolutely loved it! I couldn’t believe I hadn’t heard of it before! Enjoy!

12. I know I’m late to this but just wanted to say how much I loved both books! I’ve had several families, both when I was working in rehab years ago and now in the schools who relocate to obtain better services. This gave me a different perspective of their struggles! Loved the characters and how it all unfolds from each storyline. There’s so many good things to take away from each book. I love this club because of the variety and can honestly say I would not have read a few of the club books without motivation but then loved them!!

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