I guess I’m feeling sorry for myself today. It started this a.m., when I had a pretty intense discussion with my new shrink about what I was going to do with the information that came from my new neuro. After talking with totally outraged friends who were incensed that my present neuro didn’t tell me about the pineal cyst and were miffed about how my experiences were described in the letter to my PCP, I was seriously considering looking for a new neuro.
Until my shrink talked some sense into me.
Said they, “So, this is Neurologist Number … Three?”
Said I, “Yes.”
Said they, “You can’t keep jumping from doctor to doctor…”
Said I, rather abashedly, “Uh… I know…”
We had a pretty frank discussion about how the medical profession is not having a particularly good century, thus far, and how doctors have so much pressure on them, these days, so there’s only so much I can expect from them. And there are plenty of people with much more pressing problems than mine — which are really borderline and are more exploratory than anything else, at this point. True, there are things that have been going on with me for some time, that I’ve been urged to follow up on, but it’s not like I’m in serious trouble and unable to function at all.
I’m high functioning in some ways. In others, I’m less so. It’s getting past the okay stuff to the problematic pieces that’s the major conundrum in my life.
Frankly, I’m not sure I’ll ever be able to get to the bottom of what needs fixing, so I can function as well as I can all across the board. Not really. I just can’t describe my symptoms and issues in ways that others can understand. At least, I haven’t been able to do it, yet. Maybe someday I’ll be able to, with the help of a speech therapist, but right now, I have no great hope of it. I’m just so awful at communicating what’s going on with me, when pressed for information. Just awful.
And it just pisses off the people who are trying to help me.
So, I’m beyond help.
I don’t mean to sound depressed or anything, even though I kind of am. I guess I just had higher hopes of being able to connect with medical folks, and not only failing at that, but also being told there’s no great hope of me being able to do it any better with anyone else, bums me out, too. I’m probably being a drag, right now, and I apologize for that. But for others out there who are dealing with TBI stuff, and for the sake of those who are trying to understand what people like me have to go through, I hope my words can help shed at least a little light on what problems TBI folks face in seeking health care.
I suspect this is going to be a pretty significant issue in the coming years, as our veterans return from Iraq and Afghanistan with head injuries and PTSD and lots of other issues that they need help with. What is this country going to do, when thousands of folks with communication and self-assessment problems like mine — and physical conditions that are far more severe — show up needing help? What are the doctors and nurses of this country going to do? Shrug their shoulders and say, “Oh, well…” and turn away? Or dismiss them as malingerers? Or, absent any clue about what the real problems are, pump them full of drugs that will either ease the symptoms or knock them out sufficiently to not notice them so much?
It makes my heart hurt, to think about it. It’s bad enough that I have to go through all this, when I’m relatively able-bodied and in possession of my faculties, a job, a house, a family, and a relatively stable life. But those who are far less fortunate, and who have paid an unimaginably high price for the sake of this nation… well, it just seems awful to me.
What seems even more awful is this attitude I keep coming across about how doctors have to work hard enough at their trade, without having to extend themselves for people like me. As though learning to communicate with me and figure out what’s up with me in ways that are accessible to me doesn’t matter one bit. As though any communication breakdown is totally on me. I am more than willing to do everything I can to communicate with my doctor(s), but I’ve been injured a bunch of times, and I’m a bit impaired, so I do need some help.
That’s why I seek out medical attention, to begin with. And that’s why I try like crazy to communicate in any way I can find… only to be rebuffed by docs who are irritated at my approach and don’t really have the time to get to know me well enough to tell if I’m really okay, or if I just think I am.
I really want to be positive. I really want to be hopeful. I really want to be generous and gracious and extend myself to my beleaguered doctor(s). But right now I’m too tired from being lectured about how hard doctors have it, and how I can’t expect too much from them, and how other people are much worse off than me, so I shouldn’t take up too much of their time, I’m too frustrated, too … well, everything… to see things in a rosy light.
The ironic thing is, I started out this whole quest from a place where I was totally DIY with regard to my health. I stepped into the fray, agreeing tacitly to call a truce with the establishment and give the medical field the benefit of the doubt, and keep an open mind, be compliant, try to be the best patient I can be. But now I’m being sent away again.
So, I’ll just keep looking. I’ll keep asking questions. I’ll keep recording my life. I’ll keep pressing for answers I need, even if I have to look outside the usual areas (and inside my own heart) for the answers I need. I’ll go back to doing things the way I always have — on my own, because nobody else has the time or the energy or the willingness to help me in the places I’m the most vulnerable. And I can’t leave myself wide open to that level of dismissal and neglect.