This past weekend was a busy one. It was busier than I expected, because a project I’ve been working on had a “pre-launch” on Saturday, and I had to join a conference call for a few hours, starting at 8:00… and then I was on-call for the rest of the day.
I also had errands to run, in advance of next week’s Thanksgiving vacation (which actually won’t be much of a vacation, because there will be so much travel, family stuff, and tiring activity). It’ll be good to be away from work, but the change in schedule brings its own stresses.
But all in all, things are good. I know that, even though it’s going to be challenging, I have the tools and the skills and the capacity to handle whatever comes my way. This is a huge change from before. Monumental. And the fact that my last nasty concussion was at Thanksgiving in 2004 (13 years ago), always brings up the reminders of how my life was turned upside-down, starting around this time of year.
I’m managing all the different things I have to “juggle”. Getting errands done in advance. Doing up-front planning for when to travel and what to do along the way to keep from being destroyed by hours and hours in the car. Regular stops are called for. Stretching and exercises by both myself and my spouse. Taking our time, so we don’t suffer too intensely from the whole trip.
I’m actually pretty concerned about the physical effect this trip will have on us. We’re both in king of rough shape, physically. My spouse more than me. And it’s tough, because they’re not very active, to begin with, and that makes it harder for them to recover. Plus, the reactions of our families, when they see just how limited they are with their mobility. People can be both insensitive and cruel and alarmist. What’s needed, most of all, is for people to be strong and positive and supportive. Not despair and think all is lost from what really could be a temporary condition.
Time was, I was pretty crippled, myself. Intense chronic pain that seemed like it would never go away. A state of mind that was defeatist and full of despair. I’m not like that, anymore. And frankly, I think what I did has as much to do with it as anything that I thought or told myself
I’ve been thinking a lot about how I managed to put my life back together… how I managed to restore my Sense-of-Self. I had a lot of help from someone who talked sense into me each week. But I think even more than that, what brought me back was effort and action — consistent effort and action.
Taking action and then giving a lot of thought to the results… and then taking more action… that’s done wonders for restoring my sense of who I am, and getting me on solid ground again. The thing about TBI is that it takes away your sense of who you are — that unconscious, instinctive trust in yourself. And when that goes away, it makes life that much more stressful. Which means that you don’t learn as well as you could under less stressful conditions. And that means your recovery gets delayed. I know mine did. For years.
Because I didn’t recognize myself. I didn’t know who I was anymore. And I became unrecognizable to the people who used to be my friends.
But as I just got on with my life (kicking and screaming, the whole way), and I worked through one situation after another, I came to recognize myself again. Through repetition. Through keeping to a schedule. Through regulating myself with checklists and strategies that made repeat experiences possible and re-taught me to recognize myself.
I think rehab people vastly under-estimate the impact of that loss. And as a consequence, they (and we) lose valuable ground, without realizing it. Without ever understanding why.
After TBI, you have to re-discover who you are. People do that in different ways. For me, it came through action. Taking action. Again and again. And soldiering through the failures and frustrations to build up a better understanding of who I was, what I was about, and why things mattered to me.
Action, in addition to thought, brought me back.
But sometimes we get it backwards. I know I did, for years, up until the post-TBI symptoms were so bad, my life was about to implode. People still do it. All the time.
I was talking with a friend yesterday who’s been having a lot of trouble getting their life together. They said they wanted to understand the underlying nature of their confusion and lack of direction, in order to go in the right direction. I suggested that rather than trying to figure out the mental background of it, they simply move forward, take action, and do the things they want to do. If they wait around to understand what’s going on, they may never get started making the concrete, substantive changes they need to make, to get their life in order.
They’re in a state of “analysis paralysis”, in any case, so just about anything they do to move forward will be step in the right direction.
I’m not sure if that sank in with them, or even if it made any sense. But they seemed to get it.
And I hope they can take the steps they need to take.
Anyway, that’s on them. I have my own life to worry about. But I’m too busy doing things to worry much, these days.
I’ve been thinking a lot about how things have changed for me and my TBI recovery, over the years. Thanksgiving is behind me, along with the anniversary of my fall in 2004. I’m now looking forward to 2016, looking back on my past and thinking about the future.
I have had some pretty amazing leaps forward, and now that I am in the process of finding a new neuropsychologist to work with, I am thinking a lot about where I am, relative to where I’ve been — and where I want to be. Truth be told, I have a long ways to go before I am where I really want to be. Maybe I’ll never get there. But I have my dreams. Likewise, I am so much farther along than I had been in the past. And the past year or so has seen a tremendous change in my mental state, my cognitive abilities, my resilience, and pretty much every aspect of my life. There are places where I am falling down and coming up short — memory issues, losing track of the big picture when all the details turn into many-headed hydras of problems, impulse control problems, and snapping at people (and internally) over nothing. But my ability to identify these things and deal with them is leaps and bounds ahead of where it was, just a few years back.
The thing is, at just about every turn in the road, even when I was making good progress, it felt like a struggle for me. Until the past year or so. Even when things have not been great for me, functionally, I’ve been more resilient, better able to handle the ups and downs, and I’ve learned. Lightning speed, compared to how I was before.
Coincidence? Just a fluke? Cumulative effects of good choices? I think nutrition changes have actually made the lion’s share of the difference. I mean, when I look at my life now, compared to prior years, there’s just no contest.
Today someone actually asked me about a ketogenic diet. I had toyed with the idea of that, some time back, thinking it would be helpful for me to “fine tune” my system and break my “addiction” to carbs and junk food. That was all very well and good, but it turned out to be a huge amount of work for me — I would have had to turn into a full-on zealot convert, to succeed. Plus, it turns out that the benefits can take a while to kick in. No thank you. I need to see results fairly quickly, or it just doesn’t keep my attention.
My bad, I know, but at least I know myself.
What I diddo, however, is add healthy fats to my diet. The low-fat diet I was following was good, according to popular perception, but the more I read about the benefits of healthy fat — and thought about it too — the more sense it made to get some fatty goodness in my life.
And boy, am I glad I did! If there is one thing I did that really tipped the scales in my favor, I believe it’s adding healthy fats to my diet. This is something my neuropsych would never tell me (because they’re not a nutritionist or doctor, so they don’t feel qualified to recommend these things – which is a shame). I had to find it out for myself. But if you think about it, it makes sense. We need protein and fats and good nutrition to keep our bodies nourished. A starving body has a hard time healing, and since saturated fat is one of the main components of brain (which is 60% fat, as it is), if you don’t have enough of the right kinds of fats, the brain just isn’t going to function at its peak.
I believe that’s what was happening to me over the years, and I suspect that’s what really delayed my recovery. Ten years seems like too long a time to recover from the fall I had — I know I have had a bunch of head traumas over the course of my life, but falling down a flight of stairs and hitting the back of my head doesn’t seem like the sort of thing that should nearly kill me and wreck my life for years on end.
I can’t help but wonder how things might have been, had I gotten more healthy fats in my system at the start. The brain, like any organism, needs help to heal. And by keeping my diet low-fat, I believe I was prolonging my recovery.
If there’s one thing a person can do to help themself after a TBI/concussion, it’s get more healthy fats in their diet. Put a glob of Kerry Gold grass-fed butter in your coffee, instead of cream. Eat fish with high fat content — deep-water / cold water fish, especially — and foods with the good stuff, like avocados.
Drink your water. Get your exercise. Get plenty of sleep. Avoid stress.
And support your system with healthy fats, so your brain can heal faster and better.
I have been looking at my WordPress stats, following up on who has recently followed this blog.
In the last 2 weeks, 24 of you have joined me on this journey (22 via WordPress, 2 via email), so welcome. I don’t mean to be rude or take you for granted — please know that I appreciate you following, and I hope I bring something positive to your life.
I’m about to go out for my morning walk on an amazingly beautiful day, and before I do, I just want to say:
Whatever brought you to this blog, was probably for a very good reason. People come here all the time, not knowing what they will find, then they discover something that helps them. It’s both by accident, and by design. I don’t have any particular “content strategy” in mind, other than writing about the things that matter to me, as a TBI survivor dealing with an invisible set of difficulties, a regular person trying to build the best life possible, and as a member of the larger community who is sure that I’m not the only one who feels this way.
There are times when I am annoying, I whine and bitch and complain and am not my best self by any stretch of the imagination. I can be petulant and cranky and self-absorbed, and I can be a real trial at times — especially to myself 😉
Be that as it may, I have an incredible amount of goodness in my life, and I want to share that experience, as well as show others how I’ve gotten there through a combination of hard work and perseverance, and using my noggin to determine if what I’m doing is actually working. The times when I fail are the biggest lessons — and at times the most valuable.
I’m not afraid to fail. I just get a little tired of getting back up all the time.
But then, don’t we all…?
I know I am not alone in my frustrations and challenges. I’m human, and whether you’re dealing with a brain injury, another sort of injury, past trauma, ongoing difficulties in your life, or a hidden condition that others can never suspect is going on, we are all in this together, and we all have so much to share, if we take the time and put forth the effort.
The effort is not easy. But it is worth it. I start most of my days on this blog, because I remember all too well what it’s like to go through life in pain and frustration and despair, and feel so terribly alone. Some days I’d rather be doing something else than typing into a machine, and I can go for days without writing a word. But I know this is important — to me as well as others who find their way here and really value hearing someone else talk about life in ways that they can relate to.
That happens all too seldom. But I hope it won’t happen here.
So, to all of you — followers, as well as new readers from all over the world — thank you for your support. I’m happy you’re here.
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.
Jody Jaffe is exploring innovative treatments after suffering two brain injuries from riding accidents.
The first thing I did when I could remember my name was call a local horse dealer. My Paint mare, Rorschach, had to go. She’d flung me earthward twice in the four years I’ve owned her. Twenty years ago, I’d have laughed about it and kept riding her. But 20 years ago I could tip my head back without getting dizzy; I wasn’t tired all the time; I could follow even the most boring conversation without zoning out; and I didn’t have to search for words, keys, cell phones, notebooks, olive oil or whatever I’d just put down.
And 20 years ago I hadn’t yet written an article for Washingtonian Magazine about an unconventional treatment for brain injury. Which is why the second thing I did after I could remember my name was call Mary Lee Esty.