Some have called me an idealist and did not mean it as a compliment, but there is something within me that in spite of all the negative experiences; all that can (and does) go wrong in life, still believes that the 100th time’s the charm.

Years ago I had a friend who had left an abusive husband who beat her repeatedly. To escape him she had to leave her son behind (something she hated to do, but there was no way she could have taken him with her with no money and no place to go, sleeping in laundromats, and staying in homeless shelters, and her husband would have probably found her before she’d had time to leave town and would have killed them both). In fear for her life she fled from Alaska to Georgia to start a new life, then obtained a divorce by mail. It was interesting how she healed from this toxic relationship, the process by which was partly healthy and partly not. She drank too much, slept around in an attempt to validate she was lovable and for a reliable place to live, and often had rocky relationships in which men sought to control her because of their higher status in life.

Even with all these unhealthy coping mechanisms she had some that were quite healthy and quite transformative. She was a heavy smoker and devised a way to systematically cut down her use of tobacco until she successfully kicked the habit.

She also had a wry whit part of which she’d honed from reframing phrases used by her abusive ex that (ironically) helped her to find humor in some of the must un-humorous circumstances. One of these phrases was

“First you gotta find somebody that cares…Then you gotta tell ’em.”

While these words were used as a sarcastic message to tell her he didn’t care about her, once she’d removed herself from his life she was able to take this phrase and change the connotations from those he’d meant to discount her, turn them around and use them herself to empower her.

It occurred to me that taken literally this is exactly what she did. She found somebody that cares and she told them…and low and behold they listened. She left a place  where her husband had all the control and influence and she held no credibility and widened her circle to find those who did not have split loyalties and who could truly support her.

In my 20s I took lots of people into my home struggling with difficult circumstances and she was one of them. I knew how it was to feel that nothing you said would make a difference, to feel powerless at the hands of your abuser, to have one’s whole environment completely controlled, and I wanted to do what I could to extend any street cred I had and share it with others so that they could have a soft place to fall and to heal at their own pace, in their own way.

Sometimes this process starts by one’s groping in the dark, but one must be allowed to do this without another removing their free choice even when it may appear from the outside that the person has no idea where they’re going. Anthropology suggests that man does what one can to always right ones-self no matter what. It is an instinct we all possess and I truly believe that the best outcomes are self-directed and will believe that as long as I live.

The phrase used by my friend’s ex and reframed by her is a model by which one can find their way out. When I first started this blog I made the difficult decision that I was going to make my process public because I felt (and still do) that much of what allows atrocities, stigma, and discrimination to continue in modern society is that those who are targeted are often beaten into submission and into closets where they hide in fear and shame while those who commit these crimes against them prosper and go on with their lives as though nothing happened.

All too often society is more concerned with maintaining the reputation of a perpetrator than they are the survivor. These nameless, faceless people who remain in the shadows die silently and are sometimes even vilified when they do speak out. Their truths are not considered positive enough to be discussed in polite company and attention is focused on their “telling” instead of on the act that was committed against them, and the important message gets lost in the translation.

Native American culture places alot of importance on the story as a transformative modality, while Anglo culture tends to dismiss it as overly sentimental or even “circumstantial”, yet who can really judge what is and is not relevant. It depends on the beholder and whether he or she values the teller and the wisdom the story imparts.

Those who do transform and reinvent themselves usually do so because they never allow shame to define them and they tell, and tell, and tell until they find their supporters who are loyal to them and not to their abuser(s).

When one does this an amazing thing happens. It takes the power away from the abuser and creates change both inside and out. Sometimes you have to go through 100 who don’t hear your message before the tide turns and it resonates, but trust your own process that it will. If we fail to trust our own judgment then the abuser wins and gets to define us by his yardstick. It is natural and human to have moments of self-doubt, but at our core if we believe in ourselves we will find those who believe in us and will accompany us to the finish-line.

Yesterday even as sick as I’ve been feeling, I began to notice a shift. I think it began when I saw the physical therapist. Although she couldn’t help me (with physical therapy) in some unexpected way she actually did help me by validating that I knew what was right for my body and what wasn’t. She recognized without my saying anything in the first few minutes that the plan that had been laid out for me was all wrong. If the shoe didn’t fit I could not wear it and sooner or later this fact would reveal itself. Although this shift was long overdue I began to see that the professionals charged with helping me would eventually see for themselves what I’d been saying all along, and those that didn’t would be replaced by new supporters even without my actively replacing them.

Today I faxed the material to my pulmonologist about Vanderbilt’s Autonomic Dysfunction Clinic and instructions for referral and information about the Undiagnosed Disease Network and its multi-site NIH-funded study. This innovative clinical trial seeks to help people who are having difficulty getting a diagnosis for their persistent symptoms and are often vilified for their doctor’s inability to put a name with the disease-process robbing them of their function, peace-of-mind, and even their lives. Its plan is to map the genome of these people with unusual and unnamed diseases that don’t fit the mold as well as to use other state-of-the-art methods to quantify what other tests commonly used in clinical settings don’t or can’t. Yesterday my pulmonologist sent me an unequivocal reassuring message that in no way was he going to back away from me and on the Patient Portal that is a big show of support. He had the courage to do what my GP couldn’t bring himself to do and it meant alot to hear him say that.

Knowing that he had access to the full electronic record that I could not read I knew that he probably read whatever Dr. V. had written and that most likely it was not the ominous sign my GP had implied. This validated further my growing sense that it was more a matter of how my GP was taking what she’d written than what she’d actually written. Further still, the Nursing Supervisor of General Neurology returned my call today and shared with me that Dr. V. had validated my Dysautonomia even though she’d charted it “by patient report” in the context of her saying she wanted to do the Gallium scan to find out whether the Dysautonomia was secondary to my Sarcoidosis (important point being that she believed it/me). While the Nursing Supervisor couldn’t guarantee that the Nurse Practitioner or a doctor covering for Dr. V. would write the saline order, she did say that she’d speak with the Dept. Head, Dr. G.E. tomorrow morning and find out whom I should make an appointment with and that the reason they wanted me to come in is because they want to carve out enough time to go over all my comparison MRI and CT scans and my Gallium scan and then advise. I’m thinking they may have found something, as she mentioned it may make a difference whether the Dysautonomia is primary or secondary. She did say that the Nurse Practitioner knew something about Dysautinomia and was patient-centered and so was Dr. E. Maybe, just maybe this will finally happen.

It was one of those light-bulb moments when I realized that when my GP had told me in the office that he “could not take any of” my “patient reports at face value” and that Dr. V’s validation that I have a real underlying neurological condition “wasn’t good enough” (in his words), what he was really telling me was that he (not she) was looking for reasons not to believe me (despite the fact that she did!)

While I still don’t understand his personal motive for doing this to me after 12 years I thought he’d supported me, I know now for sure that it was his issue, not mine and not hers. I don’t know if I’d ever get the truth out of him as to why he’d throw me under the bus like this, but it is comforting to know that other doctors I see do not share his cynicism.

I believe that his supervisor knows the truth about why he’s doing this and that’s why she (unlike he Neurology Nursing Supervisor) hasn’t called me back. I’d left a message on her voicemail saying I needed to know the status of the situation and whether he’s through treating me like a ninny or not because I need to know whether to count on him for anything in the future because I cannot go on like this with his foot-dragging and passive-aggressive behavior.

If he is dead set on treating me this way and viewing me so unfavorably then I won’t bother wasting my time with him, and will transfer everything over to other doctors, whereas if this is a temporary issue due to something going on in his personal life then maybe it could be remediable. The longer it goes without a phone call from her the more I begin to suspect the worst.

If nothing else I’d like to get some closure even if it turns out his “support” for the entire 12 years was merely an act of deception on his part. That would hurt, but at least I could proceed based on the truth rather than going in with rose colored glasses just to have all my goals tanked at the worst possible time. I’m not one to jump to conclusions and just throw people away and I prefer to work things out with them if their intentions are good, but having illusions that intentions are good when in fact they aren’t could ultimately do me more harm than good. As my health is declining it is becoming ever more imperative that every doctor on my team be working for me and not against me if I am to have any chance of getting what I need to have the best quality of life.

Eyes on the prize, everyone. All hands on deck. I guess we’ll see when I go in for this consultation whether they actually will support me in my plan for my treatment for my body and just how patient-centered they are in supporting my process.