Watching within

“You’re feeling sleepy…” No, I’m NOT!

So, this year is off to a roaring start. I’ve already had a few situations of hurting people’s feelings — that escalated from people being super-sensitive to something I said, or how I behaved.

I will admit, I have come on very strong at times, and I have had a little “scorched earth” action, where I felt like I was either being threatened or disrespected.

Yeah, I’m not much for being threatened OR disrespected, and I will react if it seems like that’s happening. I have to watch myself, though, because that can cost me — in damaging existing relationships or nipping new ones in the bud before they get a footing.

The thing is, I need to make sure I don’t over-react, which I can certainly do. Especially if I’m not paying attention to what’s going on inside my head and veins and autonomic nervous system, I can quickly switch into survival mode over some interpretation. In some cases, I need to be in survival mode, but I don’t need to completely scorch the people who I perceive as a threat, like Smaug laying waste to so many Middle Earth towns.

Yeah, gotta watch that. Particularly when I am tired and stretched.

I had a couple of tricky situations this past week, during the conference. Even before I left the airport, I had sent an email to a colleague who is also a good friend, which really hurt their feelings. I was reacting to them running their mouth and getting me in trouble because they don’t know how to be discrete about sharing information with upper management before it’s been fully analyzed. They let a few little factoids slip, and the uber-uber-boss got wind of it and proceeded to tear my boss a new one, over what was really nothing.

Geeze. And this after I’d specifically told this person to NOT share information with the uber-uber-boss. God help us.

Anyway, the email I sent was terse, abrupt, and pretty harsh. The situation called for it — something had to be done to keep them from continuing to run their mouth. But then they got all worked up over it and pitched a little hurt-feelings hissy fit, and then it blew back on me and I had to spend days patching things up. If they’d been able to keep their mouth shut, this never would have happened. But the individual who “over-shared” has impulse control problems. They always have. They get carried away and say and do things that make them extremely difficult to deal with. I don’t doubt for a minute that it’s due to them having sustained a severe brain injury when they were younger — they got thrown from a motorcycle and landed on their face and spent the next week in a coma, then had to learn to do everything — walk, talk, function — over the course of several years.

When they get tired and out of sorts, all the standard TBI stuff comes up — impulsiveness, outbursts, emotionality, aggressiveness, confusion, disorganization… and last week, when I sent that email, they were coming out of an extremely long week that was a prime recipe for TBI meltdown — for both of us.

Because I was tired, too. And under pressure. And I wasn’t minding my P’s and Q’s, and I let things get out of hand. I wasn’t the bigger person, and I took matters into my own hands, and the result was not pretty. It’s human, it’s to be expected under the circumstances, but I don’t want to do it again anytime soon.

The second experience I had was at the conference, when I met up with some old friends whom I hadn’t seen for a long time. One of them brought their new love interest with them, because they wanted to introduce them to me and my spouse. After an initial contact at the hotel that was pleasant and friendly, I had to run out and take care of some more things, then I came back, and we spent more time all hanging out together.

That’s when things got dicey. The new Love Interest started telling us about themself, and the more I heard, the less I liked. First of all, they had dredlocks, which is a huge flag for me with white people. Something about white people wearing “dreds” pushes a bunch of buttons with me, partly because every white person with dreds I’ve ever known has come from a privileged background and they live their “alternative” lives scamming off other people. This is only my own limited experience, but every white person with dreds has given me attitude about being part of the “system” and selling out for my full-time job and my house and my regular life.

It makes me insane. Partly because I work in the “system” and have a full-time job and house and regular boring life, because it’s the only way I can function under my circumstances. I need routine. I need predictability. I need a full night’s rest, or I cannot function. At All. This isn’t by choice — it’s by necessity. Certainly, I would love to be able to come and go as I please and be all alternative and what-not and “live my dreams” and “embody my passion” however and whenever I like.

But for me, that’s a recipe for disaster. My brain is such that if I don’t have regular routine and predictability and a whole lot of really boring stuff giving structure to my life, I lose it. It’s not pretty. I become extremely difficult to live with — as the Love Interest found out.

So, there I am, hanging out with people I really love and care about, and here’s this dredlocked person making snarky comments about “white people”. As though they’re not white. And they start talking about their past, moving around here and there. Back and forth all over the world. USA – China – South America – Europe – Asia – back to the US – all over. I guess I got a bit jealous, because that’s the kind of life I would rather be living, but circumstances demanded different choices from me. It’s a little rough to move around the world all the time, when your spouse is disabled and ill, they depend on you to survive, and you can’t keep a thought in your memory for longer than 15 minutes.

According to my spouse, I got pretty aggressive with this Love Interest, firing off questions about where they lived and when. Thinking back, it was definitely an Alpha-situation, with me standing over them, like some interrogator, bombarding them with questions. At the time, I was so caught up in learning more – I actually wanted to hear more about what they did, and when. At the time, I didn’t intend to be aggressive. At least, I don’t think so. I was actually really interested in hearing what they had to say. I wanted to hear more.

But it wasn’t perceive that way, and apparently I made everyone in the room very uncomfortable. I was clueless that people were uncomfortable. I was just focused on hearing more, because my life has been so incredibly uniform and established for the past 20 years.

At the same time, though, there were some alarms that were going off in my head — so maybe I was being aggressive.

The first alarm was the dreds. The second alarm was the Love Interest trying to sell my spouse on their services doing “neurolinguistic programming” — a/k/a hypnosis — to solve some of their mobility issues. My spouse has some serious and long-standing mobility problems due to back and leg pain, and many people have told them it’s because of some emotional block or unresolved issues. Personally, I think it has more to do with them just not moving enough and not strengthening the right muscles to support their frame. They also need to lose about 30 pounds. Most healthcare professionals we talk to, feel exactly the same way. But lo and behold, here’s yet another “alternative healthcare practictioner” trying to sell my spouse on mind control techniques to solve their physical problems.

Of course, it couldn’t be done in just one session. But after an “intake interview” they could continue to work over the phone at any distance. The rate was $100/hour.  No insurance coverage available.

So, yeah, here’s this individual who’s living on the margins, pretending to be something they are not, just flitting around doing as they please, subtly slamming people like me, and they’re trying to hard-sell my spouse into signing up for hypnosis, which of course I will be paying for out-of-pocket, if it ever happens. On top of it, they’re talking to my spouse about working together to create some sort of alternative event, and I’m getting a sickly deja-vu in the pit of my stomach about all the other marginal folks my spouse has tried to work with who started out seeming so alternative and progressive, and just turned out to be nutso, flighty, opportunistic users who thought they could take advantage of the “rich” people with the salaried job, the house, and the two cars in the garage.

Come to think, of it, I’m surprised I was as polite as I was, that night. If I had really been aware of how I was feeling at that time, I probably would have 86’ed them, or called it an early night.

But like I said, I was pretty clueless about just how threatened and aggravated and antagonistic I was feeling. I was in the “zone” — or so I thought. And my memories of the evening were totally different from how my spouse describe them to me later.

Anyway, the rest of that evening went slowly downhill. I was actually feeling pretty strong, that night, and I had a good time catching up with my old friends. But the Love Interest became increasingly withdrawn as the evening went on. They wouldn’t make eye contact with me, and when we rode back to the hotel, they made sure to sit far away from me. It was weird. I mean, I tried to reach out and talk to them, but they kept their distance. Maybe because I was a representative of “THE MAN”, and/or I wasn’t playing along with their alternative role-playing game.

In the end, they barely said good night to me, and they were obviously glad to get away.

I feel badly about the situation — mostly for my friends, who were obviously fond of the Love Interest. To them, they were wonderful, from what I could tell, and it seemed like they did really care about each other. But my shields went way up – to 110% – with this person around, and I was NOT going to have my spouse snookered into yet another boondoggle that was expensive, time-consuming, far from guaranteed, and happening on the other side of the country.

Yah, not gonna happen on my watch.

Looking back, I realize now that my instincts were pretty accurate. I was “tuned in” to what was going on beneath the surfaced, and I took corrective action without going ballistic. I could have gone ballistic, under the circumstances. The warning signs were written all over the situation. But aside from some pointed questions and uneasiness-provoking directness, I didn’t go all Rambo on the Love Interest. I just made it clear that I was not buying what they were selling, I didn’t just agree with every little thing they said. And I didn’t give a shit if I did piss them off.

My friends were certainly uncomfortable, now that I think about it, and they should be. Because here is someone they ostensibly love and trust, who is probably using them for their own selfish purposes. And I hate seeing that happen to anyone I care about. My friend who is dating them has fallen in with questionable people before, and they are extremely susceptible to users like this. I’ve seen it before, and it appears to be happening again. I think it has to do with some sort of guilt from their parents having money and being community leaders, and them wanting to reach out and help the less fortunate.

In my experience, the “less fortunate” can sometimes get that way because they would rather scam others than take responsibility for their lives. And I hate seeing good-hearted people used by those kinds of scammers. So, to stand by and do/say nothing and act like everything is hunky-dory… that’s not an option for me.

This isn’t a game, folks. This is life. I know that my friends come from money, so they will always have someone to help them, should things go sour for them. They can afford to fritter away their days and years without terrible consequence (like for me and my spouse). Their parents keep them well provided for, even well into adulthood. But can we really afford to squander our lives — our precious, precious lives — on people and experiences that constantly take, and do not give?

There is so much that needs to be done in the world, and it makes me absolutely NUTS to see the talented, gifted, intelligent people in my life frittering it all away on people who take advantage of their good hearts. They fritter it away to rebel… for entertainment’s sake… or because they don’t realize just how precious and rare their talents and gifts and intelligence really are.

What a waste.

Unfortunately, I can’t spare my friends from their poor choices in love mates. But at least, in this case, I didn’t allow the User to “attach” themself to my spouse and come home with us. Yes, people got their feelings hurt, and yes, people were really uncomfortable. But I can sleep better at night, knowing that there is no way in hell that predatory parasitic Love Interest is going to come anywhere near my family again.

They tried to work their NLP hypnosis magic on us, and it didn’t work. I saw through it and took corrective action. I wasn’t consciously aware of the details at the time, while it was happening, but I went with my gut and my instinct, and as it turns out, I was — as they say — Right On, Man… Right On!

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Wish List Item #1: Consistent quality information about TBI

m had some extensive comments to one of my earlier posts — good stuff that bears repeating:

…. Over the past few years I have seen the quality and availability of information increase exponentially. As I mentioned brainline.org is a great resource. ABIN-Pa and BI-IFEA are two other grassroots organizations – one a local chapter that is very active and the other a web based group with many subset topics with extensive memberships and resource links. And the DCOE has tons of information, including many daily information bulletins and news updates on research, and studies.

I had heard about the BI-IFEA from Kathe Perez, but since it’s a LinkedIn group, which is part of a professional networking site, I’m reluctant to even go close to it. I’m on LinkedIn, but there is no way on earth I am going to reveal to the larger professional community that I’m a multiple TBI survivor. In these economic times, I’m not taking chances with people’s tolerance and enlightenment levels. It’s just too risky. It’s a shame I can’t get to their resource lists. I’ll have to check out the DCOE site. At first glance, it looks quite good.

The Brain Injury Association of America has a very deep site and many individual states have great BIA sites with lots of material, presentations, white papers, events, video clips etc as well as links to site specific topics – Wisconsin, NJ, New York, Pennsylvania, California, Kansas are just a few of the state groups that have extensive websites. I am also involved with a project to create a single point of access/repository for all materials produced or available through these individual brain injury organizations creating a consolidated library of information for free public use.

Thank heaven for that! You go… I’ve been thinking about how much we need something like that — a clearinghouse of all the collected information from the different BIA chapters. Having it segmented out from state to state is tremendously frustrating. From where I’m sitting, there should be a central BIA database from which all the chapters pull – not individual respositories. Have a decent data warehouse — at the very least, a DB with meta data which indexes all the collected information and links to it, for common access — and break out the individual state-specific info based on a field in the DB. Please, please, please enlist the help of a competent data architect to design the DB  — I’m assuming, perhaps erroneously, that you’re not such a person. Having a properly designed and normalized database for this can make everyone’s life a whole lot easier. I’m happy to help with the DB design (I’ve done a bit of it, myself, in my day — for large-scale enterprises with millions of customers — scale, baby, scale) so let me know if I can contribute somehow. Hmmm… now you’ve got me thinking… I’ll have to capture what’s coming to mind.

Individual hospitals that are part of the Models of Care System produce a large number of research reports and papers – available through their individual sites, the BI Models of Care site and through the COMBI site. The Dana Foundation has a lot of brain research information. And then there are special sites like Give Back Orlando etc.

And here’s yet another one of my frustrations — there’s all this great information out there, but it’s not generally available to people, unless they know what to look/ask for… or they connect with another person who has that specific knowledge about the sites. Ugh – it’s just so frustrating. Will a returning vet understand how/where to look — or their spouse? Or their significant others/family/friends, etc? And if they do find their way to the info, will they be able to get to it, to navigate it? It’s the eternal issue with the online world — figuring out what info is where, and how to use it. As much as everyone likes to come up with their own site design, it would be nice if folks could agree on a best-practices information architecture, especially with regard to TBI information. And then we have the issue of the content itself — is it scholarly, academic, accessible to everyone, written for the general population… what? Even if you are fortunate enough to find something, can you actually use it?

Is the information quality? I’d say for the most part yes, it comes from studies and current research and people in the field. Some sources are more open to ‘outside the box’ stuff such as HBOT, TCM, neurofeedback, meditation, yoga, etc etc. And some are more conservative in their approach. Generally special interests groups are NOT involved – such as the pharm industry – but of course any given research group has bias and their own perspective. It doesn’t invalidate their data but it may make it more applicable to an individual demographic or subset. How much does commercial money influence people? As much as it does with heart medicine, diabetes, etc etc. – that is to say that they give more money for certain kinds of research. But the range of studies is promising and if the results yield something positive, the money will likely follow.

Yes, quality information is key. But again, can people use it? I think there should be some sort of hierarchy established, some sort of ontology of sorts, around the type of information that’s out there.

As for ‘outside the box’ therapies, if they work and they aren’t dangerous, I think they can be an important part of recovery. Some of the more fringe treatments worry me, and I tend to be concerned about extremes of scientific/medical rigor — folks that are totally into it, can let it keep valuable treatments from the population, while folks who want to just get treatments into the hands of the needy may bypass the “quality assurance” stage. Conundrum! I think there needs to be a middle-ground somewhere.

Regarding commercial interests, I was thinking more along the lines of rehabs plugging their own flavor of TBI rehabilitation, to attract new patients. Or doctors who are proposing radical new treatments which may or may not work — I’m thinking here of  Dr. Daniel Amen and his SPECT-scan-based approach. Maybe it works, maybe it doesn’t, but “It requires the injection of a radioactive material,” which I do not find particularly appealing. I had an MRI and they gave me a contrast agent which made me ill (and I’ve read it may have a bad effect on my kidneys). However, someone who is desperate for help, might go down that route — “Shoot me up, baby! I’m suffering, and nobody gives a damn!”.

This is just one example I can think of, off-hand. Given that CAM or non-traditional healing is generally not covered by insurance, and people are prepared to pay for it anyway, it opens the door to even more questionable stuff, which people may feel is worth the risk and the expense, because they cannot get any sort of help or information anywhere else.

Personally, from what I’ve observed among friends and acquaintances, people are willing to put up with all sorts of “treatments” from alternative “healers” in no small part because the “healers” are so willing to share information, and they genuinely care for the people they’re working with. One example I can think of, was an “aesthetician” I once met (read manicurist and pedicurist and beauty salon owner) who wanted to do more for her clients, so she went to some workshops and took some classes, and started representing herself as a “cranial sacral practitioner” — just because she did laying on of hands on people’s heads and lower backs. True story. And scary.  Care is so very important — but it needs to be accompanied by intelligence, competence, integrity, and quality control.

Having good information available to people who need it in a way that’s accessible is an important first step.

A brilliant opportunity

I woke up today thinking that the TBI survivor community has a great opportunity before it — with the power of the internet and new electronic publishing technologies like blogs and forums and emerging print-on-demand technologies, we really do have the ability to offer each other the support that we cannot (and probably will not) find from the “system” that’s supposed to help us.

The medical industry doesn’t seem to have much interest in helping us address our issues in a consistent and substantive way.

All that some can manage to tell us is, “Every TBI is different,” without mentioning the myriad similarities so many of us have — and can benefit from hearing/learning about.

And frankly, there’s not a lot of money in rehabilitating someone who is no longer “able” to function at the same level they were before…

So many of us just get sent out to pasture. We fall between the cracks. And people who are in public positions to change that, don’t seem to care. I’m sure, on some level, they do, but so much is not known about this condition, and so many other conditions are more obvious and more easily tracked and more easily conceptualized… and are less frightening to the average person, that TBI just isn’t on the radar the way, say, cancer and heart disease are.

Now, I lost one of my little sisters to breast cancer, 2-1/2 years ago. I sat at her side and held her hand during her last hours of dying, so I’m certainly not opposed to cancer getting as much attention and funding as possible. And people close to me have had heart issues, so I’m all for addressing that, as well.

But doesn’t anyone have any attention to spare for TBI folks?

Perhaps not — but we do. We, the survivors. We, the family and friends. We, the ones with the most to lose and the most to gain. We can — and should — be there for each other and pool our resources and experience and strength and hope, for the benefit of everyone concerned.

Ultimately, the very society which doesn’t have much time for us, will ultimately benefit. But that’s not something I can prove right now, and it’s not something I can substantiate with numbers and metrics, so society at large will just have to wait and see how well we can rebound… and how well we can serve one another in the best way humanly possible.

An opportunity lies before us, to come together and pool our resources and offer one another help and support — largely in the form of information that’s distributed across the world wide web. Our info can go a long way. We can do for ourselves, what others cannot do for us. So, let’s do it!