Here’s more discussion of The 10 Myths of Head-Injury — with some strong disagreements by me, which when considered seriously, might actually improve the quality of care of TBI survivors.
This is what Thomas Kay, Ph.D. and Muriel Lezak, Ph.D. have to say:
Myth #4: The Lourdes Phenomenon
This is often a side effect of subscribing to Myth #1 (the Myth of “Recovery”). The reference is to the town in France (Lourdes) where miraculous cures of illness are reputed to take place. There are many families who firmly believe that some “miracle” will occur after brain injury and return their loved one to normalcy (recovery).
BB: Okay, first of all, let’s define “miracle” — is what people are expecting actually a “miracle” compared to what science/medicine imagines is true, or is it miraculous by everyday standards? I can see how a belief that some magical event will take place to bring a person back to how they were may be unrealistic and self-defeating. But at the same time, miracles happen every day, and medical reluctance to admit to really good things happening unexpectedly just makes it seem all the more miraculous. So by its very denial, medicine contributes to the belief in “miracles,” yet it’s apparently blind to this.
I’m going to rein myself in on this one, because as I discussed earlier in my response to Myth #1 (the Myth of “Recovery”), I categorically reject the idea that recovery is not possible for people with traumatic brain injury. First of all, the definition of “recovery” is far too limited, in the way it appears to be used by Lezak, et al., to really constitute real recovery. They seem to equate “recovery” with returning to exactly how you were before your injury. But “recovery” can mean a whole lot of different things, and in fact, I like to use the term in the same sense that my friends who are recovering addicts or alcoholics use it. It’s not about going back to how you were exactly before your injury. It’s about recovering your functionality, your dignity, your ability to cope and grow and change, to be a full person living a full life. Anyone who denies that to a TBI survivor is worse than cruel. They’re also a little dense, and not to be trusted with true recovery, as far as I’m concerned.
Belief in this myth often takes the form of “doctor hopping” or “program hunting.” Families will put the head injured person through every available program or with every available therapist. Despite any tangible signs of improvement, many will continue to believe that if only they could find the right person or right approach, everything would be better.
BB: Okay, let’s hold on just a moment, here. “Doctor hopping” or “program hunting”? How is it wrong to continuously seek out the best care possible for someone you love and care for? Referring in such a derisive manner to a person’s quest for quality care in the midst of a totally f’ed up medical system that can’t even agree on proper standards of diagnosis and care for TBI survivors, is not only pompous and self-serving, but also dangerously dismissive.
I could have been accused of “doctor hopping” prior to my diagnosis and rehab, because nobody I went to seemed to have a clue, and nobody seemed willing to actually help me — or even tell me exactly what was going on with me. They asked me about my mental/emotional health. They asked me about my relationship with my parents. They asked me when the last time was that I took drugs. They came up with snap diagnoses, from “Meniere’s disease,” to repressed childhood trauma, to not getting enough sleep, to playing music too loud. They asked me a few questions, came up with a quick answer, wrote me a prescription or gave me a specialist’s name, and sent me on my way. But could they stop and listen and take some time to actually consider the whole of my situation in a logical and considered manner? Nope. I guess I didn’t have enough billable conditions. Or they thought I was just looking for attention. Or drugs. Or they thought I was crazy. I stopped looking for help from doctors, when I realized that they were on track to have me put under psychiatric observation and shoot me up with pharmaceuticals to make me more manageable.
Of course it is true that often head injured patients make significant gains only when hooked up to a competent therapist or top notch program, but that is not what is meant by the myth. Families who believe in this myth cling to the most unrealistic expectations when it is evident to everyone but them that their loved one has limitations which are not going away.
BB: Really? “Only when hooked up to a competent therapist or top notch program”? It can happen that you can make significant gains if you’re connected with someone like that. But other people who do NOT get proper care do make gains. It can be tremendously difficult and painstaking and full of needless suffering, but there is such a thing as self-directed, even spontaneous recovery. The medical industry seems to have pretty much organized itself around denying that this can happen… and only when they start to lose money, and then figure out how they can “integrate their findings” with the very facts they dismissed before, do they start to get with the program. Of course, by then, it’s way too late for a lot of people.
One of the other things that’s maddening about this is that it’s been my experience that people need to have information to go on, and when they can’t get information from a doctor or other healthcare provider, they turn to other sources. Like their faith. Like the internet. Like someone they talked to who had stories of miracles. Like actual accounts of miracles. If anything, it seems to me that the medical establishment only encourages people to look to the fantastical sides of life, by not providing the information that people actually require to make logical connections of their own.
I do “get” that some families will cling to completely unrealistic hopes, and that must be frustrating for lots of rehab people. But how much of that is fed by reticent doctors and specialists who won’t actually talk to them about what they know and what the family can expect? Acknowledging that patients and their families are in fact human and deserve the respect and dignity of a real response to their situation could go a long way towards addressing the gaps that are filled in by the miraculous.
TBI is like a black box in medicine, and terribly few professionals actually seem willing to discuss it openly and frankly. It’s a combination of the medical system, I think, along with doctors just not knowing enough — or being sure of things that are flat-out wrong.
The solution lies not in finding the right “cure”, but in helping patients and families become aware of and accepting the limitations and developing new goals and expectations.
BB: As Charlie Brown would say, “Aaaauuuuuugggggghhhh!”
This just makes me crazy. “The solution lies in … ‘helping’ patients and families become aware of and accepting the limitations”? Dude, WTF?! Seriously. I mean, I get that we change after brain injury, but we change just when we live our lives. It’s simple human nature. None of us are the same from year to year, and we don’t talk about our changing personalities and priorities and abilities and goals in terms of “limitations”. Sure, there may be changes — sometimes extreme ones — but calling them all “limitations” is insulting and denies the truth of the whole of human experience.
And in any case, whatever happened to the whole neuroplasticity thing? Seriously folks, we come into this world blank slates who are formed and educated and shaped by the world, and our ability to grow and learn and change never goes away — unless we let it. We have so much more ability to learn and change and grow, than many of us expect or realize. And if we approach our recovery like we would approach re-raising a child (in this case, the kid is us), we may find ourselves encountering many of the same issues that we saw when we were younger. Now we’re older and a lot of our cluelessness makes no sense (to us as well as you) so it can be confounding. But folks, let’s think about this in terms of re-learning and re-teaching and not just give up.
Oh, no — never ever give up.
Thank heavens I didn’t give up on reading, three years ago, when I was having a hell of a time remembering what was paragraphs from one page to the next. Thank God I didn’t just quit reading altogether. I thought I was going to have to, but then I decided I was going to train myself to read again. I could do it before. I learned how to do it when I was a kid, so why not follow the same kind of process that I did when I was little, to teach myself again as an adult? Why the hell not? That’s what I did — I started out reading things that I may or may not have understood, but which were fun to scan and run my eyes across. Then I started reading adventure books — spy novels and such — because they held my attention. They didn’t always make sense, and I didn’t finish any that I started, but at least I got going a little bit. Then I “graduated” to other kinds of books about things that interested me – Samurais and zen masters. And I’m not back at a point where I can actually read an entire book. It’s taken me a few years, and it’s been very disheartening at times, but I did manage to do it.
Not being able to read was a pretty obvious hardship for me, years ago. But it was not a limitation that I was willing or able to accept, so I fixed it. And the thought that tons of TBI survivors can also be capable of re-learning necessary and needed behaviors, because it’s more “realistic” — it just makes my blood boil.
What a tremendous waste of human capability and potential. It’s heart-breaking. And the people who are promulgating this mindset are “experts” who are looked to by their peers and lots of other people for guidance, direction, etc.
Like Charlie Brown says, “Aaugh!”
Why shouldn’t we have miracles? Why shouldn’t we have hope? What gives anyone the right to steal away our hope? What gives anyone the right to kill our spirits, in the interest of “protecting” us? It makes no sense.
Unless… you consider that the people who are encouraging us to scale back our expectations are A) not very smart, outside of their chosen fields, B) not very experienced in life outside the laboratory, C) not willing to put in the work to help us recover, D) not able to bill insurance companies for the extended time it takes to help us, E) too accustomed to thinking inside their little boxes to consider alternatives, F) very invested in defending their positions because they’ve built a reputation on them, etc.
There are many reasons to cave into the pressure of seemingly insurmountable TBI difficulties. If the experts want to give up and go off and sip umbrella drinks on a beach instead of helping us, then let them. But they have no right to deprive us of our hope.
Screw ’em. I’ll design my own damn’ recovery, thank you very much.
And on that note, I’m off to continue my day. Time for lunch.