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The fall of the spider monkey

Posted Jun 16 2009 12:20am

I actually didn’t get to see my diagnostic neuropsych yesterday. They had a family medical emergency to deal with in the p.m., so our session got pushed off a bit.

It’s a bummer, too, because I could have really used a sympathetic ear. It’s not like I want someone to sit around and pity my — that’s about the worst thing ever. But I could use an hour or two with someone who actually understands that I’ve got issues and is focused on me dealing with them in a constructive manner.

The new neuropsych therapist I’m seeing has been very helpful to me already. They’ve helped talk some sense into me and helped me deal with some logistics in my life. But they seem to be into “tough love” — urging me forward with my life to do the things I need to do in order to be a viable individual, and not cutting me a lot of slack in the process.

It’s really a change from my last therapist, who was into helping me “get in touch with my feelings.” They were really into my emotional well-being and talking about things that had happened to me in the past, and how I felt about it all was a big part of each session. It was also completely new for me to be having those kinds of conversations with another person. What I feel and how I experience emotions is something that’s always been reserved for the inside of my head and heart. I don’t wear my heart on my sleeve, and I have no interest in doing that. So, having those kinds of “how does that make you feel?” conversations with another human being was new and different for me.

And as much as I balked at it — at first, and continually over the past year or so (including today) — I kind of got used to it.

So, now it’s going away, as my “touchy feely” therapist (God love ‘em!) is retiring. And my new neuropsych therapist (I’ll call them NT, versus ND, for “Neuropsychological Diagnostician” who’s done the testing with me) is completely different.

NT is way into logistics (from what I can tell), making sure I’m staying on track with my job and my marriage and my daily responsibilities and doing all the things that normal regular people do in their lives, MTBI or no. They’re part coach, part sounding board, and they don’t actually seem that comfortable talking about emotional stuff. Or maybe they’re holding back to see where my tender spots are, so they don’t push me too hard and push me over the edge.

When I first met with them, being nervous and apprehensive and anxious about starting therapy with a new person, I was on the verge of tears a few times, which I absolutely hate. I get nervous and angry with myself and feel so self-conscious that I get all teary and choked up. It’s not that I’m sad or emotionally distraught — that’s how my frustration comes out at times. How annoying…  It’s hard to have an adult discussion and feel like people are taking you seriously when you’re fighting off tears over every little thing. But that ’s exactly what happened, the first couple of sessions I had with them.

So, maybe they think I’m really fragile and they need to handle me with kid gloves for the time being. Or maybe they think I’m unstable.

I did give them a list of my head injuries over the course of my life, so I’m sure they’re factoring that in, somehow. I get the feeling, sometimes, that they’re trying to see if I’m dangerous and prone to act out. That’s got to factor in, somewhere. I think I have told them I have a history of violent temper, and it’s only the two of us in that office, so there they are with me, being ginger and diplomatic and testing the waters.  Am I a caged animal? Am I just looking for a reason to act out? Am I a threat to myself and/or others? They may be wondering… watching… looking for a hint of threat from me.

Anyway, this starting period with NT is tricky. And it’s getting on my nerves a little bit. I want to be able to pick up where I left off with FT (”first therapist”) and just be myself and speak freely. But I have to remember NT is a new person, they don’t know me, they need to get their bearings. And I also have to remember that my sessions with FT were like this for over six months before they started to loosen up with me. And there were times when I did feel like I scared FT a little bit, so NT probably just has to get to know me, before our sessions really get some traction and we start talking about what’s going on inside me.

It’s going to take some time. I know that. NT does neuropsych testing for kids, so they must see kids coming in all the time who have real problems, and I’m not sure how many neurologically impacted adults they see in their adult counseling practice. It could be that they don’t see many at all. The thing is, I’m starting to feel like they are really very skeptical about how my head injuries have impacted me over the course of my life. It’s almost like they don’t believe me. Or they think I’m lying. Or they think I’m trying to tap the system for help from some state head injury program or get disability or somesuch.

Granted, there are a lot of people who do take advantage of the system. They do take advantage of the government and government programs. I have a sibling who does that — they’re highly educated, as is their spouse — and they have all the advantages in the world, yet neither they nor their spouse will work full-time, and they tap into government funds for help raising their kids. This is just so odious to me, I cannot even begin to say. With all the gifts and the privileges and advantages they have, they throw it all away — and their kids have been harmed by their choices. And if there were any way I could change that, I would. But they take their entitlement to the lowest extreme possible, and no one is served — least of all, them.

But that’ s not how I am. I have walked out of bad living situations in the past and have chosen to walk the center city streets of one of the country’s largest and meanest cities, looking for a doorway to sleep in, rather than seek help from a shelter or go find some agency to help me. That’s just how I’m built — I do for myself, or I don’t do at all. And when I talk about my problems and try to identify my issues, it’s not so that I can suck the scant resources from an already over-taxed social system. It’s so that I can come to terms with it all and get on with my own life.

I guess I just need to make that clear to NT. When I talk about the difficulties I’m having, they keep telling me things that make me think they don’t consider my losses to have been that great. Or they don’t think I have that many problems. They talk about how other people have trouble with memory… other people have trouble with physical pain… other people have trouble with understanding what people are saying to them… other people have trouble with sustained attention… Everything I talk about that is difficult for me to accept, that wasn’t there before my injuries but showed up afterwards… Everything I mention that I’m having trouble with, that I didn’t used to have trouble with… Everything that’s getting in my way, behind the scenes… Well, from what I hear NT telling me, that’s just life.

As though my problems aren’t really that extreme. Or debilitating. Or difficult to overcome. Maybe I’m making it all look too easy… Maybe I’m not being forthcoming enough about my issues and putting them in the right light. I’m not sure how to do that, though, because it’s incredibly difficult for me to actually talk about these things, to begin with. I don’t want to be afraid. I don’t want to be upset. I don’t want to be turned around and lost and have a hair-trigger temper. I don’t want this stuff to be in my life to the extent that it is, and it’s really embarrassing for me to even mention it aloud. It’s not normal for me. And it’s not acceptable for me. But when I talk about it, NT acts like it’s no big deal. Or that I should be content with what I have and not worry so much about what I’ve lost — if I’ve really lost anything at all.

It’s frustrating. And it’s why I wanted to see ND yesterday. Because the big point that ND made with me from the start, is that the injuries I’ve sustained have caused certain significant losses relative to me. Not relative to the rest of the world, which apparently often operates on a different scale than me. Relative to me and my abilities and my skills and my capabilities. My own baseline is higher than average. I have a lot of abilities that are well above average. I have God-given talents and skills and abilities that are measurably high-end (and here I always thought I was a total idiot!). But in the course of my life, getting hit on the head, falling, getting into car accidents, etc. have cut into my ability to make the most of those abilities. Sometimes,  they’ve stopped me cold. And unfortunately, my injuries have often happened at very critical times of my life, when I was about to move forward — or I could not afford, in any way, shape or form, to sustain a TBI, even an MTBI. So, the timing of them, coupled with the subtle (and unaddressed) impact of them, combined in some karmic double-whammy that knocked me out of the running, just when I was about to jump forward in my life.

I look back on my life and I see all the potential I once had. I see all the joy, all the excitement, all the vigor that propelled me through life. And I see all the hopes and the dreams I once carried. I see all the talent I had as a young kid who understood fairly complex geometric concepts from an early age, who wrote short stories and novellas from the time of grade school, who had such a consuming interest in certain topics and such an enduring ability to dig in and really relish what I learned about… I think about my teen years, when all the world was a fascinating oyster for me to explore… I think back on my early adulthood, how I was so very intent on doing the best I could do, being the best I could be… and how clear I was about what I was going to do with my life, what I was going to accomplish, what I was going to achieve… and how I always knew there was something inside of me that was so unique, so promising, that all the world felt wide open to me.

At least, that’s how it felt inside. Inside my head. Inside my heart. Once I got outside my head and started to interact with the outside world, it all fell apart. I couldn’t get my thoughts together. I couldn’t understand what people were saying to me. I couldn’t keep up with what was going on. I couldn’t follow through with much of anything. I would get so turned around, so tired, so frustrated, so backed-up, and so upset with myself for being so stupid around other people, that I could never get anywhere. I just couldn’t. I’d get my words mixed up, I would lose a lot of what people were saying to me, I’d misunderstand, but wouldn’t understand that I’d misunderstood…

And it would all go to hell. Again.

How I can explain this to NT, I’m still not sure. They don’t seem to think I have real problems understanding. Or maybe they do, and they aren’t showing it. Maybe they’re just trying to make me feel better about myself and not let me get hung up on my difficulties. Maybe they think I’m just lying about all this for some nefarious reason. All I know is, they don’t seem to think my difficulties are that big of a deal, and it’s disheartening.

It’s like having someone who’s colorblind tell me that I should be bothered by suddenly not being able to see different hues of green and red. It’s like having someone who is not physically fit telling me I shouldn’t feel bad about not being able to run up 20 flights of stairs, like I used to. It’s like having someone who has never had much money telling me I shouldn’t feel bad about losing 60% of my retirement savings to the market slide(s) of the past 10 years.

It’s all relative, certainly. But I do feel my losses grievously. And even if other people don’t know what it’s like to have what I had, I do. And I know what it’s like to lose it. And miss it.

Spidermonkey The closest analogy I can think of is that I’m like a spider monkey who lived up in the trees all my life — swinging from trees high above the earth, eating fruit and flowers, having a grand time galavanting to and fro…

… Until I fell and hurt myself and lost my sense of balance… and then I lost a finger… and another… and another… and then my tail was chopped off… and I lost the rest of my right front paw.

Progressively, I have lost the ability to jump and swing through the branches like I used to. I can’t hang from limbs and pick and eat fruit and flowers like other spidermonkeys can. I can’t get up into the highest branches, where I used to swing without a care. I can’t just galavant, to and fro, and be a monkey.

I’m grounded. Stuck on the forest floor with the capybaras Capybara, who are content to graze and forage on the ground, who have no need for tails, and perhaps never gave a thought to spending any time up in trees. And who certainly don’t miss the sight of blue sky above the vast canopy of treetops – because they’ve never seen it.

“What’s so terrible about being on the ground?” they ask me. “Why be upset — there’s plenty of grass and plant life to eat down here… You should be grateful to have what you can get. Why would you want to be swinging around up there, anyway? And why would you want a long tail like that? Seems to me, it would just get in the way!”

It’s an imprecise analogy, I know. And it might not make sense to some. But sitting in session with NT, it’s how I feel. Being told that ‘everybody has problems’ with memory or pain or whatever other problem is holding me back, doesn’t help me come to terms with the fact that I’ve lost it. That part of my personality is gone, that my identity has been compromised. And it may not be coming back. Maybe I’ve been deluded, all these years, thinking that my life could have been any better than it was…

But you know what? My life used to be better in some ways, than it is now, and nobody can take that knowledge away from me. I have lost. And I have lost a lot. And I’m trying like crazy to build back what I can. If I just throw up my hands and say, “Oh, well, I suppose that’s my lot in life, I should just be grateful for what little I have,” it may make me feel better in the short term, but it flatly denies what I feel in my heart — that I am capable of more and better than I have been doing… that there must surely be some way for me to make the most of what I have and build back at least some of what I need… that I don’t have to settle and I don’t have to resign myself to a disabled life.

I have lost. I have lost a lot. And it sucks. But that’s not the end of the story. It never is. I am not giving up, and I am not going down this road to make less of my life than is capable. I’m going down this road to make more of myself than I am now, or was before. Even if I have fallen. Even if I have been hurt. Even if I have lost things along the way, I can’t give up. Not now. Not ever. No matter what anyone says — even a well-meaning, highly educated and professionally experienced therapist.

In the end, we all have to make peace with our limits. And make of them what we will…

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