Myth #2: Recovery Occurs in a Year
It was a traditional rule of thumb for physicians to tell patients and families that “whatever recovery will occur will happen in the first 12 months.” This was probably based on the observation that the neurological examination at one year was quite predictive of neurological status years later.
BB: I find it interesting that neurological exams after one year of recovery can be predictive of neurological status quite some time after. I don’t know exactly what this means. Maybe it has to do with neurological qualities or states. Maybe it’s a measurement of how the brain works overall.
Neuropsychological research unwittingly advanced this myth by looking at groups of head injured patients and discovering that the group mean on certain tests stabilized at about one year. Unfortunately, families understood all this to mean that functional recovery stopped after a year.
BB: Yeah, looking at groups of patients is problematic, especially because brain injury is such a unique phenomenon. No two injuries are alike, and no two recoveries are alike. What we do have in common is that we have to do things differently, and we have to stick at it. It’s pretty sad, that families were led to believe that functional recovery stops after a year, and you’re just stuck with what you’ve got. It sets everyone up for failure and frustration, and it’s not necessary.
Nothing could be further from the truth. First, more careful research seems to show that the duration of improvement varies as a function of severity of injury; less severe injuries improve more quickly, more severe injuries more slowly.
BB: I’m glad to hear them saying this. Improvement varies, as much I think as a part of a person’s overall makeup, as the type or severity of the injury. I sometimes thing that in my case, the fact that I’ve had a bunch of concussions over the course of my life, and I’ve been really forced to learn to adapt and grown and change despite the setbacks, may have made me more susceptible to brain injury, but it’s also made me more prone to be more flexible and open to new ideas about how to rebound. I hear stories about TBI survivors who get stuck in rigidity and inflexible behaviors and thinking, and I remember the times when I was there too — and how I eventually figured out that there were better ways to live and behave and relate to other people, than those brittle, rigid ways. Obviously, everyone is different, and there are many personality factors that come into play, but that’s what makes TBI as intriguing as it is frustrating and confounding. I guess a lot of it is how you look at it.
Second, group averages hide individual variations. While the average group score on a test may not change significantly after a year, individuals within that group may continue to improve.
BB: Amen to that. Group averages are never, ever going to reflect the potential of each individual. Averages are by nature… well, averages… and you can’t use them to gauge the chances of specific persons. One person might dramatically improve in some ways, while they lag in others. And the opposites might be true of someone else. But together they average out to this sort of sad mediocrity. Averaging out individual results is like going up to a masterpiece oil painting and taking a brush and swirling all the paints and colors around and around and around until you have a grayish brown mud that looks like chemical sludge. But if you consider each color individually and give it time, it can solidify and hold its own, so when you take a brush and swirl it around, five years later, the colors still stay separate and distinct.
Third, neither neurological nor cognitive status is the same as functional ability. Often, it is the environmental changes that occur years later –the death of a parent, the establishment of a relationship, the establishment of a new local program– that is the trigger for a spurt in functional gain.
BB: … neither neurological nor cognitive status is the same as functional ability. I’ll say. Just look at all the people out there who aren’t particularly brilliant or extraordinarily talented, yet they succeed beyond anyone’s wildest dreams. You never can tell, what a person has inside them. And when you’re challenged by some external challenge… that can force you to dig deep and find resources you didn’t think you had before. This has been happening to me a lot, lately. Challenges are popping up all over the place, and I’ve been thinking it’s because I’ve been doing something wrong. But in fact, this may be because I’m doing something right — the better I get, the more I can handle. So, the fact that things are pretty challenging for me, right now, and I honestly feel like I’m losing my mind, might just be a good sign — not a sign that everything is about to fall apart.
The danger with the “recovery occurs within one year” myth is that it lulls families and professionals into thinking that the client’s level of performance at one year is what everyone is stuck with. While the major brain healing may well have occurred within this time frame, true rehabilitation may just be beginning.
BB: This isn’t just true of TBI survivors, I think. It’s true of everyone. We tend to think that we have limits to what we can do — only so many years, only so much talent, only so much love — and when we reach the outer limits of what we think we can do, then we assume it’s all downhill after that. Poppycock. One of the key ideas in this paragraph is about true rehabilitation just beginning, after considerable healing has taken place. The brain doesn’t just need to recover from the insult. It then needs to rewire…. to lay in some new grooves and pathways… to find out where else it can expand. When we set limits on ourselves and our brains, we cheat ourselves of the chance to find out what else is possible. And that’s sad.
On the other hand, many patients and families who have been told the patient “would recover in a year” interpreted this to mean that no matter how severe the injury, by a year the patient would recover fully. This expectation has set the stage for much bitterness and unnecessary disappointments for patients and their families.
BB: It’s a sad state of affairs, that people have believed this. But when the doctor says so, why wouldn’t you believe it? Surely, they must know… right? Maybe. I’m astounded at how many physicians are functionally illiterate when it comes to neurological issues. As though the brain can be avoided or shunted off to the side. I think that people need to be more realistic about doctors and other healthcare providers, and not just accept all they say at face value.
Likewise, healthcare providers need to be cognizant of the impact of traumatic brain injury on how people process information. Of course, everyone wants to believe the best, and a traumatic brain injury can be, well, traumatic. That can seriously mess with your mind and cause you to cling to all sorts of unrealistic hopes, latching onto the first glimmer of hope that comes your way. It’s nobody’s fault, that’s just how we work. And everyone needs to be aware of this phenomenon when discussing and dealing with recovery from TBI.
Well, it’s getting late, and I’m really tired. Time to head to bed.