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Finding hope and making meaning after brain injury

Posted Mar 03 2013 11:29am

Spring… time for new beginnings…

My day is off to a pretty good start. Last night I got in bed early and probably got between 7-8 hours of sleep, which is a record for the past week or so. Long-distance travel really does a job on me, especially when it’s for work and I have to be “on” the whole time. Getting back to some semblance of normalcy has been a big struggle for me, which I really don’t care for. I like my routine. I like my cadence. I like knowing where I’m going to be, and when.

I hate to wing it. I hate to “fudge” times and dates and whatnot. It’s just more details I have to keep track of, which is a terrible waste of time, especially since I tend to forget those details and then I end up looking either like an idiot or a poseur, or both — none of it is good.

Anyway, in search of something better and more hopeful, and in honor of being back on my home turf and back in my own daily routine, I spent my time this morning exercising (first thing when I got up), and then having a good breakfast, and then sitting down to read and study a bit. I’m reading some interesting work by Howard Gardner, who came up with the “multiple intelligences” theory that saved my ass back in the 80′s. All of a sudden, my own version of intelligence, which didn’t match what everyone else expected, wasn’t so bad after all. So, thank you Dr. Gardner, for that.

I also did some reading in the sizeable collection of PDFs about neuroscience and TBI that I’ve collected over the years. I unearthed this little gem: The Importance of the Patient’s Subjective Experience in Stroke Rehabilitation (you can download it by clicking this link) , and taking a closer look. I think I read this, back when I downloaded it a year or two ago, but I honestly don’t remember. Heck, I might have blogged about it… but again, I don’t recall. (I searched my blog for the title, but I didn’t find anything, so it could be this is my first mention of it.)

In any case, my memory notwithstanding, it was a good read. The things that are discussed are just as appropriate to traumatic brain injury as they are to stroke/acquired brain injury. I highly recommend it to anyone who has experienced either,  as well as those who live/work with them.

The basic gist of the article is that in brain injury rehab, survivors can be severely impacted by their own subjective experience of their injury — they can take it hard and it can really knock their feet out from under them, because (among other things) their sense of self and sense of who they are/should be is so disrupted — sometimes beyond their own comprehension. One of the hallmarks of brain injury, be it TBI or stroke, is a tendency to not have a clear view of where you stand on things, what your abilities and limitations are, and to not be able to express your feelings very clearly about what seems to be going on with you.

As Prigatano says:

Many patients with brain dysfunction are more confused than meets the eye. They simply do not know how to approach the problems they have experienced nor how to discuss the feelings they have that are associated with their restricted functional capacities. They do not know how to deal with interpersonal relationships in light of their … condition.

Been there. Frequently. It’s not fun. And it’s exhausting to have to cover it up and compensate for it all the time.

The thing is, this can lead to a real slowdown in one’s willingness to engage with the rehab process, and it can undercut your recovery. When you’re uncertain and stressed and you can’t see your way through something, it can lead to a “catastrophic response”, which is where everything feels like it’s collapsing in on you, and you’re totally screwed, and there is no way in hell you’re ever going to find your way out of this mess. So, you just quit. You give up. You can’t move forward, back, or anywhere. You’re just stuck. Catastrophe. What seems like the end of the world, can come to be like it, because we just quit.

And the bigger problem that actually contributes to this phenomenon, is that brain injury rehab people (or others who are helping with our recovery, including friends and loved-ones) don’t always take the personal experience into account. They focus on the acute issues, they focus on functionality, or they get into the exercises, drills, whatever, to help restore functionality to the person… without actually addressing the impact this has had on the individual themself.

So, overlooking that aspect of the experience can contribute to a slowdown in progress. And not only does the survivor see less advancement in their abilities, but their self-image and ability to participate in life is even further impacted. It’s a vicious cycle, which has its roots in overlooking the personal impact that a loss of functionality and change in personality has on the survivor.

I’ve seen that myself with my own neuropsych. They tend to try to steer me away from dwelling too much on the difficulties I’m having, and get me to focus on the positives. Rightly so. I can quickly become mired in my own despair, because I can’t see my way out of things and I have a catastrophic response where I just quit talking, quit responding, quit everything. It’s too much. How many minutes (maybe hours) I’ve spent with my neuropsych, just sitting there shut down, not wanting to move or talk or respond or communicate because I didn’t know where to start… I can’t even count them. At the same time, though, not having someone who “is supposed to understand” acknowledge the difficulties you’re having, can really put a damper on your enthusiasm. It’s only in the past couple of months that they’ve even mentioned some sort of empathy for my situation. I get the “tough love” thing — yeah, I should keep my spirits up and look on the bright side instead of indulging my morbidity and paranoia… at the same time, though, it would be nice if I could at least get some acknowledgement from them that I’m not crazy, being concerned about some of this stuff I experience. And their reluctance to “indulge” me by acknowledging the down-sides of my situation, has really stymied my work with them at times.

Now, on the other hand, when the subjective personal experience of the survivor is addressed, it can open doors to further improvements and developments. Frankly, it’s a relief, to hear someone say you’re not crazy for feeling antsy and nuts and jumpy on a sunny day after a long night without much sleep. It’s a relief to (for once) hear someone talk frankly about your temper flare-ups and not make them into a federal case, like everyone else does. And it really takes the pressure off, when someone acknowledges that you feel how you feel, even if there’s not a lot of “reason” behind those feelings.

Here’s a great case study / example story excerpted from Prigatano paper, as recounted by the author:

… Years ago, a middle-aged accountant suffered a right hemisphere stroke with the consequential effects of a left hemiparesis with mild neglect. He experienced pathological crying where he suddenly would burst into tears, even though he was not sad or unhappy.

He was referred to me for neuropsychological rehabilitation to help him with his pathological crying. In helping him do so, I asked him to focus on his shoe, a neutral object, any time he had the urge to cry. When he did this, it undercut his pathological crying response. He was so appreciative that he began to talk to me in more detail about other concerns in his life. He emphasized that throughout his life he had been a good provider and that he and his wife had enjoyed a healthy sexual relationship. He noted that after his stroke, it was hard for him to get an erection; he was embarrassed over this issue and did not know how to approach his wife. He often would avoid having contact with her for fear that he would not be able to perform sexually. His wife expressed that this was not a major concern or issue for her, but he felt differently. The question was how to help him.

We talked about what he had done in the past to please his wife. He indicated that he always had a good sense of humor and that he always was romantic in his manner of interacting with her. We then talked about what he might do symbolically that would reflect his commitment to her and his desire to continue to make her laugh and to be sensitive to her from a romantic point of view. We struck upon the idea that he could purchase or write 365 love notes that he could give to her throughout the course of a year. He was ecstatic with this idea and immediately went about accomplishing this task. Each morning when his wife took a shower, he placed one love note underneath her pillow. When she found it, she often smiled, and there was a sense of comfort between the 2 of them. One might expect that over several weeks and months this would become fairly routine and boring, but his wife stated that she always appreciated the fact that he took the time and the energy to prepare these notes. It was the sense that he was giving back to the relationship within the context of what he could give that was crucial to maintaining their love relationship. He did this willingly as a reflection of his own individuality. It was something productive, something he produced that was useful to him and to another (his wife). These 3 experiences – preparing notes for his wife (a work activity), giving them to her on a daily basis as a sign of his intense affection (love), and finding the activity fun or enjoyable (play) – had a profound effect in reducing his sense of despair and in maintaining meaning in his life in the face of a rather devastating stroke.

I think that’s pretty cool. Even though the man’s wife wasn’t bothered by how he had been impacted by the stroke, it mattered to him. And they found a way to work around it. Dr. Prigatano didn’t just dismiss the man’s concerns, he worked with him to find a way to “make up” for what he felt he’d lost. And that counted for something with both the man and his wife.

It counted, because it added meaning and purpose to the man’s life. And that’s where TBI can really hit you hard — in the face of unexpected and inexplicable (and sometimes unrecognizable — until too late) difficulties, you can rapidly learn to feel helpless and victimized by your circumstances. And when everyone around you is telling you, “You look fine!” and wondering (sometimes out loud and sometimes not very sympathetically) why you continue to struggle with such simple things, it does absolutely nothing to help you lift yourself out of a sense of helplessness and futility.

Then life can become meaningless. It can become a chore. It can get depressing. And it can just suck to be alive.

It’s bad enough that all of a sudden you have all this sh*t you have to contend with, but then you’re alone with your experiences. No one is validating that what you’ve got going on is actually pretty tough to handle, no one even acknowledges that what you’re up against is pretty hard to take, each and every day… and absolutely no one is recognizing that the things you get right are massive victories, in the face of your perplexing situation.

In the face of this all, what to do? I can’t speak for anyone else, but for myself, I need to seek out meaning and purpose in my life. I need to identify the things that matter most to me, and build my life around those things, those ideals, those concepts, so that I feel that I’m working towards something important that contributes to society as a whole.

This blog is part of that work, just sharing the stories from my life and information I receive, so that others might benefit from it.

My relationships with my spouse and my co-workers are also a big part of it. And my career. And my home. And the things I read and study and digest and put into action in the course of my everyday. I need to stay interested. I need to stay engaged. Even if it’s just in my mind, I need to at least have some sense that I’m connected with a Higher Purpose.

All those things matter to me. They add meaning to my life. And they satisfy my need for work, love, and play. I quote again from Prigatano :

… in our Western culture, there are 3 symbols that help individuals establish meaning in life. Those symbols are work, love, and play.

The symbol of work is especially important in American culture. We often identify ourselves by our occupation, the type of work we do, and our pride in what we have accomplished in our work. Work by its nature puts us in contact with others, which allows human relationships to form and develop. Broadly speaking, work is the symbol of being productive, that is, producing a product or service that is meaningful to one’s self and to others. No matter what the person’s level of disability or impairment, it is important to help each individual to be productive in some capacity. When we do this, we reinstitute a partial sense of normality in their lives.

The second symbol, which is perhaps universally important, is the need to establish a bond with another. Love relationships are complicated because they involve the psychological make-up of 2 individuals who experience a level of intimacy with one another that they do not experience with anyone else. No one has come up with a totally satisfactory definition of love, but from my perspective it can be defined as a relationship in which the other person’s sense of well-being is as important as one’s own sense of well-being. When this is the case, a variety of sacrifices are made to ensure the other is doing well in life. After brain injury, individuals often do not have the desire to attend to the needs, especially the emotional needs, of others. This is a mistake. It is crucial for individuals to emotionally give back to others in their lives to reestablish a sense of bonding and connectedness, which is very important to their sense of well-being.

The third symbol, which is perhaps not as universally agreed upon, is the symbol of play. Here play does not mean recreation. It means the capacity to enter fantasy and to think and feel and do whatever one wishes to do. At first glance, this may be viewed as a purely narcissistic venture. It is not. When individuals are true to themselves and live their lives according to what they believe is in their best interest and follows their natural interest plans, they ultimately do better. Many individuals who have not followed this course find themselves depressed or leaving their work lives early because their work no longer provides a sense of satisfaction, despite whatever economic rewards it may produce.

Again, helping individuals identify with symbols that reflect their unique phenomenological state and what they wish to do in life becomes crucial in stroke rehabilitation and the broader field of brain injury rehabilitation.

I think this is all very true. When you don’t have a connection with anything that adds meaning to your life, and you feel like just a lump of flesh-covered bones sitting around with no redeeming qualities or abilities, there’s not much incentive to do the kind of hard, hard, arduous work that brain injury requires of us.

I have said it before, and I’ll say it again — recovering from TBI is hard work, and if you can’t find it in yourself to really apply yourself and work at it, you may find yourself in increasingly difficult circumstances as the years pass. TBI doesn’t always go away. Sometimes it seems to, but sometimes it stays with us quite noticeably for the rest of our born days… even getting worse, if we don’t make a concerted effort to make it better… to make ourselves better.

So, we have to have some meaning, some hope, some sense of optimism in our lives, to make it through. I know folks who have sustained brain injuries whose outlook on life has gotten worse over time, and their outcomes are not that peachy. In one case, the one thing that saved them is that they have a spouse who has a good job and is the kind of person who will go out of their way for them — for anyone really — to help, for the sake of helping. If they were on their own, they’d be in pretty dire straits, I believe.

Yes, keeping your spirits up and staying motivated are critical for a quality TBI recovery. I DO say “recovery” because despite the loss of some capacities, we can still recover our dignity, our sense of purpose, our functionality, our lives. We don’t have to just give in to the inevitable loss of everything that once mattered to us, thanks to TBI. No way, no how. There is far more to us than any of us can guess, and the main reason many of us founder and flail, is because we just can’t imagine that we might be bigger and better than anything we can conceive.

It’s one thing when your brain is injured, but the injury to the human spirit is even more devastating.

Well, speaking of being bigger and better than anything we can conceive, I’m going to sign off now and get on with my day. I have a lot of little chores to do, before the weekend is up, and I have a lot of thinking to do. I recently discovered (in my treasure trove of TBI research PDFs) a paper describing what kind of rehab activities my neuropsych has apparently been conducting with me. On the surface, it has seemed like I was just showing up, chatting about this-n-that, and then going home to have supper and go to sleep. But apparently, there’s a lot more going on in those sessions than I had guessed. It’s pretty exciting, because now a lot of stuff that I’d just been going with on faith is actually making a lot of great sense. Especially in light of my long history of TBIs.

I’ll share more later, when I manage to work my way through the paper. I started on it yesterday, but I was still so baked from my trip, that I had a hard time reading more than three sentences, before I had to go back and re-read what I’d just reviewed. I gave that up after stumbling and struggling through a few pages. I decided to wait till I was fresh and halfway cognizant, before I dug in again.

Damn - the troubles with reading are troublesome! It’s one of the hardest things for me to take about my situation.  Self-image and all that…

But enough self-pity. It’s time to get crackin’ — go about my business as an apparently normal person… which compared to how I was six years ago, is nothing short of a miracle. Off I go, to revel in my normalcy…

Onward.


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