When more stuff falls apart

1923 broken down car with wheel off
Sometimes, a wheel just comes off

I’m back.

But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.

So, I help out.

I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.

And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.

But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.

I slow things down, too. The fatigue is just crushing, at times, and when I  push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.

On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.

I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.

We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.

Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.

On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.

And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.

But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.

And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.

It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.

It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.

This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.

It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that in TBI S.O.S.Self Matters To Others. Who people know us to be, is also a big part of who they understand themselves to be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.

Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.

I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.

As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.

Sometimes the wheels come off. And you just have to figure out how to deal.

Onward.

Find a New Neuropsych Step #3: Scout around for neuropsychs

I want to do more than keep my head above water.
I want to do more than keep my head above water.

Step #3 in finding a new neuropsychologist is : Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.

Now that I’ve got my list of issues to track, and I’m thinking about what they really boil down to, I need to look around for who can help me.  Years ago, when I was scouting around, I did not have the level of information and familiarity I do now, and it was like trying to find a needle in a haystack. Not only were there so many details to consider (and my brain made it even worse by complicating everything and taking in every single detail without distinction), but it was treacherous going. Like a needle will jab you if you’re not careful, a neurologist whose agenda is to prove you do not have any problems, is also a hazard.

Because there are plenty of them out there.

So, first, I have to screen out the folks who could be dangerous. I’ve come across local brain injury support groups who actually keep a list of those kinds of docs — they can ruin your life.

And then I need to find friendly faces — again, there are local groups that have contacts and recommendations. My local BIA chapter actually has a list of neurologists and neuropsychologists who “get it” and have proven helpful. I have an old list from before – but I may reach out to get an updated list.

I also need to check around with other people to see if they have any recommendations. I’m not very well connected to the brain injury scene in my area, because I can’t take the chance that my anonymity will be breached. I have to keep my semblance of normalcy together, and not let word get out that I have a history of brain injury. That could sink me, and as I’m the sole provider for my household… well, I’m not all that keen on being homeless and pushed out of society, which is pretty much what would happen. I don’t have a lot of folks in my life who are fine with brain injury — I found that out, when I was disclosing to friends who I thought would understand. They didn’t. They’re not my friends, anymore.

So, I need to make sure I’m smart about this and keep things simple. I also don’t want to go chasing the wrong things, as I feel I sometimes have with my current neurospych.

As I track my issues, I am actually seeing that my sensory issues and physical issues are a major contributing factor to my difficulties. Fatigue is the #1 complication I have with mild TBI, and it complicates everything. Being on constant sensory overload, day in and day out — with the fluorescent overhead lights, the busy-ness and activity at work, noise, the deodorizer in the rest room that’s as nasty and pervasive as perfume being sprayed on you in a department store — it’s exhausting. It really takes a lot out of me, and whatever cognitive reserve I’ve got on hand, depletes rapidly when I’m overwhelmed.

So, I need to look around and find someone who can help me with my sensory issues — not just cognitive ones. It might actually be the case that while I test fine under rested conditions, when I am tired and overwhelmed (which is usually the case), that all degrades. So, perhaps it would have made more sense to evaluate me when I was exhausted, since that’s my “default operating state”.

And it could be that my neuropsych has not gotten a full view of the impacts to me, because we’ve been meeting (by my specific choice) on a day when I am about as close to “on” as I can be — Tuesday afternoon, when I’m warmed up for the week, but not completely wiped out. So, that’s prevented them from getting an accurate view of how I’m really functioning.

Anyway… I need to find a neuropsych who is familiar with sensory processing issues, as well as other physical issues. Because I swear to God, I struggle so much with them, and my physical symptoms are so intrusive and corrosive, I don’t feel like I can actually make any progress, anymore. If anything, I feel like I’m going backwards. Being exhausted, day in and day out, is an issue. Eventually, it will beat the life out of you. It’s just a matter of time.

So, my hope is that I can find someone who more fully understands these problems all across the spectrum — physical first, then mental, then emotional — and who can help me work through all of this in a common-sense fashion. It would be nice to feel like I’m making some progress again.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

Find a New Neuropsych Step #2: Be clear about what I want to achieve from working with someone.

checklistStep #2 in finding a new neuropsychologist is : Be clear about what I want to achieve from working with someone. I need to make up a short-list of my issues — a condensed version which will communicate to the neuropsych the nature and extent of my issues.

The last time I was looking for help for my persistent TBI/concussion issues, back in 2008, I did a lot of things in ways that kept me from getting help. One of those things was bombarding potential docs with a whole binder full of information about my history, my present, and more. It was seriously a sheaf of papers I had to hold together with a binder clip. And when I showed up to talk  to neuros about my symptoms, they just looked at me like I was insane.

Because I sort of was. TBI had so scrambled my brain, had so confused my ability to think clearly about, well, anything, and it had really decimated my ability to see the forest rather than all the trees. It also exaggerated just about any perception I had, distorting it like a funhouse mirror. So, of course I looked and sounded a little crazy. Of course I did.

And accordingly, I was dismissed and treated like a malingering drug-seeker — and I didn’t get any help at all.

So, I had to take care of it, myself.

This time, I don’t want to repeat that, so while I am collecting details on my current situation, I’m thinking about how that actually affects my functioning, what impact it has to myself and my environment, and how I want it to be. Cliff notes. Boil it down. Now I can actually boil things down to their most basic essence, so I’m going to do that.

This morning, I am extremely dizzy & lightheaded, feel like I’m going to fall over, my head feels like it’s in a slowly tightening vice, and I’m pretty foggy today. I’m having a heck of a time getting started. It’s holding me back, because I need to be up and at ’em, not puttering around the house, fiddling with this and that. I know better. I’m just having trouble doing better, and I’d like to fix that.

I really need to be “on”, these days, because my year-end self-assessment and performance reviews are happening now. Unlike days of yore, when your boss rated you, nowadays we have to do assessments on our activities and report on what we’ve done. This is one of those times when I can’t fake my way through — I need to be clear and concise, and I need to represent myself well. If I’m foggy and can’t get started (I’ve had real problems with initiation for a couple months, now), I can’t do my level best on my self-assessments or my future goals. I’ve struggled with just getting myself to figure out the self-report form, and I’ve messed up a couple times, putting comments in the wrong fields (of course, it would be nice if the app let me move things around, but no).

And these difficulties directly impact my ability to earn a good living, advance in my career, and be the best that I can be.

So, in order to get help with this, I need to be able to succinctly state the issues I’m having, how they are affecting me, and state clearly what I want to have happen instead. I need to give enough information that it makes sense to someone, but not so much that they glaze over.

I also need to use these notes to practice talking to someone about my issues, so I can communicate clearly and have all the right information to give them. I’ll use my notes as talking points — and possibly make up a separate bullet point list for myself — no, it will be more helpful if I am referring to a copy of what I give to the other person.

Armed with this tool, I hope to find someone to help me “hack” these problems. That would be great.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

Specialized exercise regimen relieves post-concussion symptoms

This just in from the University of Buffalo:

UB researchers are the first to show that a controlled individualized exercise training program can bring athletes and others suffering with post-concussion syndrome (PCS) back to the playing field or to their daily activities.

In a paper published in the January issue of the Clinical Journal of Sport Medicine, the researchers report that a program of progressive exercise developed individually for each participant and performed at levels just below the onset of symptoms is safe and can relieve nearly all PCS symptoms.

Read more…

Treating TBI

Treating traumatic brain injuries @ the LATimes

They can’t be set like a bone or staunched like a bleed. They can be difficult even to detect, but the military and others are working to improve care.

Larry Ewing’s life changed last year on a construction site in Victorville; Larry Carr’s changed in 2004 on a road in Iraq. Unlikely brothers in arms, both men now share the same invisible wound — traumatic brain injury.

They tire easily, forget often and lose their balance and concentration without warning. They struggle to make peace with personality changes that have made them barely recognizable to loved ones.

Read the whole story here

One concussion, two concussions, three concussions, four…

I had a meeting with my neuropsych last week, when we talked about my concussive history. I had read the article by Malcom Gladwell in the New Yorker called Offensive Play, and I had some questions about how my past might have made me more susceptible to tbi, later in life.

I was wondering aloud if my rough-and-tumble childhood (when falling and hitting my head and getting up and getting back in the game ASAP were regular parts of play), might have brought me lots of subconcussive events, like so many impacts on the football field. I checked in with my neuropsych, and they had me recap from the top, all the head injuries I could recall. My recollection and understanding of them was considerably better than it was, just six months ago. What came out of it was the determination that I’d had enough genuine concussions to do a fair amount of damage to myself. Forget about subconcussive events; the concussive events sufficed to cause plenty of problems, on their own.

It kind of threw me off for a day or two, and I got pretty stressed out and ended up pushing myself too hard, and then melted down in the evening. Not good. It’s hard, to hear that you’re brain damaged. It’s not much fun, realizing — yet again — that you haven’t had “just” one concussion, but a slew of them. And considering that I’m in this new job where I have to perform at my best, it really got under my skin. It’s taken me a few days to catch up on my sleep and settle myself down, after the fact. But I’m getting there. My past hasn’t changed, nor has my history. I’m just reminded of it all over again…

All told, I’ve sustained about eight concussions (or concussive events) that I can remember. Possible signs of concussion (per the Mayo Clinic website) are:

  • Confusion
  • Amnesia
  • Headache
  • Dizziness
  • Ringing in the ears
  • Nausea or vomiting
  • Slurred speech
  • Fatigue

Some symptoms of concussions are not apparent until hours or days later. They include:

  • Memory or concentration problems
  • Sensitivity to light and noise
  • Sleep disturbances
  • Irritability
  • Depression

I experienced most of these (except for nausea and vomiting, and not so much slurred speech, that I can remember) during my childhood and teen years. Not surprising, considering that I had a number of falls and accidents and sports injuries over the course of my childhood.

It’s pretty wild, really, how those experiences of my childhood contributed to my difficulties in adulthood — especially around TBI. I’ve been in accidents with other people who had the same experience I did, but didn’t have nearly the after-effects that I suffered. For them, the incident was a minor annoyance. For me, it was a life-changing concussion. A head injury. TBI. Brain damage. Geeze…

Thinking back on the course of my life, beyond my experiences with the accidents that didn’t phaze others but totally knocked me for a loop, I can see how the after-effects like fatigue and sensitivity to light and noise, really contributed to my difficulties in life. It’s hard to be social and develop socially, when you can’t stand being around noisy peers (and who is as noisy as a gaggle of teens?). It’s hard to learn to forge friendships with girls — who always seemed so LOUD to me(!) — or hang with the guys — who were always making loud noises, like blowing things up and breaking stuff — when you can’t tolerate loudness.

And when you don’t have the stamina to stay out all night… It’s a wonder I did as well as I did, as a kid. Of course, I was always up for trying to keep up – I was always game. And I wanted so very, very badly to participate, to not get left behind, to be part of something… That kept me going. I was just lucky to have people around me who were kind-hearted and intelligent and tolerant of my faults and limitations.

Anyway, I did survive, and I did make it through the concussions of my childhood. I have even made it through the concussions of my adulthood.  And I’m still standing. I didn’t get any medical treatment for any of these events, and the most help I ever got was being pulled from the games where I was obviously worse off after my fall or the hard tackle, than I’d been before.

But one thing still bugs me, and it’s been on my mind. During my high school sports “career, ” I was a varsity letter-winning athlete who started winning awards my freshman year. I was a kick-ass runner, and I won lots of trophies. I also threw javelin in track, and by senior year, I was good enough to place first and win a blue ribbon in the Junior Olympics. Which is great! I still have the blue ribbon to prove it, complete with my distance and the date. But I have no recollection of actually being awarded the ribbon, and I barely remember the throw. I’m not even sure I can remember the event or the throw. It’s just not there. It’s gone. And it’s not coming back. Because it was probably never firmly etched in my memory to ever be retreivable.

I’ve never thought of myself as an amnesiac, but when it comes to my illustrious high school sports career, when I was a team captain and I led my teams to win after win, I have all these ribbons and medals and trophies, but almost no memory of having earned them.

Which really bums me out. What a loss that is. When I hear Bruce Springsteen’s song “Glory Days” I feel a tinge of jealousy that the guy he’s singing about can actually recall his glory days. I can’t. And that’s a loss I deeply feel, mourn… and resent. Seriously. It sucks.

This could seriously mess with my head. And sometimes it does. But on the “up” side, it might also possibly explain why I’ve been such a solid performer over the years, in so many areas, yet I can’t seem to get it into my head that I am a solid performer. My memory of having done the things I did, in the way I did them, is piecemeal at best, and utterly lacking at worst. So, even if I did do  well, how would I know it, months and years on down the line? How would I manage to form a concept of myself as successful and good and productive and inventive and trustworthy, if I have little or no recollection of having been that way in the past?

It’s a conundrum.

But I think I have an answer — keeping a journal. Keeping a record of my days, as they happen, and really getting into reliving my experiences, while they are still fresh in my mind. If I can sit down with myself at the end of a day or a week, and recap not only the events of the past hours and days, but also re-experience the successes and challenges I encountered, then I might be able to forge memories that will stay with me over time. If nothing else, at least I’ll be making a record for myself that I can look back to later. And I need to use colors to call out the good and the not-so-good, so I can easily refer back to the date and see where I had successes and failures along the way.

Most important, is my recording of successes. I’m so quick to second-guess myself and assume that I don’t know what the hell I’m doing. And when I think back to the times when I overcame significant difficulties, I often lose track of the memory before I get to the end of the sequence I followed to succeed.

But I cannot let that situation persist. I need a strategy and a practice to reclaim my life from the after-effects of way too many concussions. I’m sure there are others in life who have had it far worse than me, but some of my  most valuable and possibly most treasured experiences are lost to me for all time, because I have no recollection of them.

No wonder my parents often start a conversation with me with the sentence, “Do you remember ________?”

Yet more thoughts on TBI and mental illness

This morning (6/9/9), I took a gander at the ways people have been finding their ways to this blog since I first started it over a year ago.

  • 38 people got here by looking for info about TBI/brains and anger/rage
  • 86 got here just searching on tbi
  • 156 got here by searching for info on interviewing
  • 39 people got here by searching for brain info
  • 225 people found their ways here by searching on tbi and mental illness

Apparently, it’s something people are concerned about.

And so am I.

I’m worried. Really, really worried. Because this society seems all too eager to label people “mentally ill” when they really have logistical problems — it’s not necessarily that they aren’t thinking properly, ’cause of some inner psychological conflict going on — it’s that they can’t think properly, ’cause their brains have been rattled or somehow impacted.

And our society seems all too eager to prescribe medicines for psychological conditions — meds which may actually exacerbate the issues at hand.

For instance, as I understand it, the irritability and temper flares that come with TBI are often due to a “constant inner restlessness” that takes up residence in your head after a brain injury. That constant restlessness can be directly related to something called “tonic arousal” which (as I understand it) has to do with how awake your brain is. After TBI, certain functions slow down — processing slows down, connections that were once intact are now broken, so it takes the brain longer to sort things out. And with that slowness comes a decrease in tonic arousal… which also can lead to attention difficulties… which can feed into all sorts of problems that can make you nuts and drive you to distraction.

TBI >>> less tonic arousal >>> increased irritability >>> more meltdowns, rage, blow-ups, etc.

Now, let’s say some doctor or psychiatrist gets hold of a TBI survivor and diagnoses them with some anxiety-related condition, or some other “psychological” dysfunction. Let’s say the attending caretaker prescribes one of those “downregulators” that slows down the processes that can feed into manic/anxiety type experiences. What do you get when you downregulate someone who’s already struggling to keep up? Decreased tonic arousal. Which can mean more irritability, more temper flares, more rage, more meltdowns… possibly increased violent acting out? Maybe?

Downregulating meds >>> even less tonic arousal >>> even more increased irritability >>> more and more and more meltdowns, rage, blow-ups, etc.

I’m not a doctor, but I don’t think you need to be one, to get this connection. Maybe not being a doctor helps you see it all the clearer, without the long-term effects of that sleep-deprived-traumatized-resident fog that lots of docs get hammered by when they first start practicing.

This really worries me — had I mentioned that?

And given how many people sustain TBIs each year, not to mention how many vets are returning from Iraq and Afghanistan with TBI’s and PTSD, etc., it really opens the door to a lot of crappy medicine and pain for the families and friends of the folks who have given their very brains in service to this country.

I think the only thing we can hope to do is educate people — not so much the doctors, because how many of them are listening? It’s about educating “the people” — the patients who look high and low for help (if they ever figure out that they need — and can get) help. Making sure people have access to truthful and accurate and independent information — and giving them easy and useful ways to wield that info as they defend themselves from the quacks of the world, not to mention Big Pharma.

Ultimately, it is up to each and every one of us to fend for ourselves, but a little help would be nice, now and then…

Getting on with just living life

I had a good session with my New Therapist (NT) today. They say I seem to be doing really well, and I’ve really turned around my feelings about work and my ability to deal with the stress, with “lightning speed”.

I guess that’s gratifying… I almost question it, however. No… wait. I don’t question it. I have come to terms with a lot of difficulty in a really short time, and it feels good.

Now, if I can get my head together around my neurologist…

Basically, I’ve been seeing a new neuro for some other issues I’ve been having, but they’re proving to be less logistically helpful, and they seem to think that my difficulties are psychological.

Ah, yes… that again.

I suspect — if I turn out to get a regular neuro at all — I’ll end up going to someone with a whole lot more familiarity with TBI than this one. I’m still looking for someone who can help me with the neurological aspects of my situation, but I’m not getting much support, either from the medical community or my partner and some of my friends, who would just love it if I just let all this diagnostic stuff drop.

And to be honest, I probably would, too.

It’s all well and good to observe myself regularly for signs of things that need fixing, but sometimes a person just needs to get on with life.

Lookit — It’s Memorial Day weekend. The sun is out, the skies are blue, the trees and grass and all the living things are just exploding with life. Why spend all my free time sitting around contemplating my issues?

Why indeed?

Okay, so I get what Give Back Orlando is all about – watching yourself regularly to identify head injured moments and do something to address them. But I’ve been doing that for quite some time, and at some point, I just need to take a break. Read a book for fun. Play some cards. Watch a movie. Maybe even go for a walk. Just have fun. And so some writing that isn’t all about my deep dark issues.

There’s an idea…

The fall of the spider monkey

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…

How to ask for medical help

It’s only taken me 20 years, but I’ve finally figured out how to ask for help from medical folks in a way that not only lets me sound halfway intelligent, but also helps them to help me.

I had a very positive and productive interaction with an individual at a hospital the other day. I had undergone some testing a few months back that came up with inconclusive results that didn’t help explain some weirdness I’ve been experiencing most of my life. So, I need to get some more testing, but I’m not sure if my insurance will cover it. So, I had to contact this hospital to find out what billing codes they use and then call back the insurance company with the info. I didn’t have high hopes of getting very far — most of my interactions with hospitals have been tremendously frustrating for me.

But this time was different. There was no fussing. There was no confused back-and-forth. There were only questions and answers — the right questions, too — and positive results. It was so positive and productive, it left me a little speechless. This is a new experience for me — usually, I flounder and flail and can’t figure out what to say to medical folks, and then they get mad at me for not making their jobs harder. But the other day, I managed to conduct a level-headed, objective, intelligent, mature interaction with someone who actually helped me.

The things I did were so basic, so simple, I feel a little stupid talking about them. But not everyone knows how to do this — including me, for the past 20 years. Here’s what I did:

  1. I identified myself with my name
  2. I identified who my doctor is
  3. I gave a brief overview my background — I had some tests, and I need to have more.
  4. I identified the issue to solve — I have to figure out if my insurance will cover these tests.
  5. I identified where I was having trouble solving this issue — my insurance company needs certain billing codes for this test
  6. I identified what I needed to solve my problem — could they tell me what the billing codes were?
  7. If they could help me, what were those codes?
  8. If not, did they know who could tell them — and yes, I would hold.
  9. I got the details from them and wrote them down
  10. I repeated the details back to them for confirmation
  11. I got their name and their telephone number
  12. I repeated once more what they had told me and identified my next steps
  13. I thanked them for their help and wished them a good day.

It sounds so simple… but until the other day, I had rarely managed to conduct any kind of conversation in this systematic a manner, and it always went poorly. I got turned around and angry, and the people I was talking to always got a bit beaten up in the process.

But the other day, that didn’t happen.

Now I know how to do this.

Magic.