I’ve been so busy working on the out-of-state referrals to upper level clinics and just living my life to notice why I’d been crying more lately and thinking more about the incident at the ER on December 3, 2015 and those further abuses that stemmed from it to realize that I’m reacting to the anniversary date.
It really wasn’t until the night of the 3rd that it hit me. I’ve been feeling so bad physically that my focus has been on addressing that and maintaining as much function as possible so that my business doesn’t fail and trying to get to a point in my assessment that my local doctors can start treatment that in many respects I have had to push this other stuff out of my mind and just keep plodding along, as I can’t afford to get mired in it for too long.
When the gaslighting began at Emory I made the decision that going into therapy for the resulting trauma wasn’t for me and would only delay the process and cloud the issue of the real medical issues I’m dealing with. I have been in therapy before (years ago) for abuse I suffered as a child, I got as much as I could out of it, that part of my life is over and I have moved on. There is a point at which too much psychotherapy is no longer helpful and one can become too dependent on it, it can cause you to doubt your own judgment, and I did not want that to happen to me. There is the tendancy once in therapy to attribute everything to “stress”, and this can be dangerous in that you ignore the signs your body is sending you that something is medically wrong.
Keeping in mind that early detection of medical problems is crucial especially as we age, one cannot afford to get into the habit of not trusting one’s own instincts, and risking that once detected it could be too late because the delay was too long. With chronic illness, especially autoimmune disease, illnesses tend to pile on top of one another as the body becomes run down and immune processes work less and less efficiently.
The other reason I made the decision to take a different approach to the current trauma is that with Asperger’s I have often felt it way too painful to talk about face-to-face with somebody and I will actually go completely mute. Lately I have felt less able to talk verbally in general, and forcing myself to do so even for the most necessary purposes takes a huge amount of effort and wears me out. Then the rebound effect of overtaxing my brain and body comes back to bite me and I am sicker the next day and sometimes the same day! The objective should be to conserve energy and do things that will increase it; not drain it over and over like a spent battery.
Physical therapy doesn’t really address my needs either. It only taxes my energy and makes me sicker from the exertion, and then there is the social interaction with physical therapist which can also be a source of fatigue and even add stress.
I may have mentioned that as an advocate and activist and an artist I have done alot of reading on art and its therapeutic effects and I actually used to run an art-based program out of my home for about 2 years.
The creative process often increases endorphines, decreases cortizol, reduces excess lactic acid, and adrenaline in the brain and body, it has been shown in research that it can bolster immune function, and it is comforting. Those of you interested in the beneficial effects of art may enjoy reading this other blog as well in which a woman does art to music.
I’ve been dealing with the added problem of gradually losing fine motor function and for an artist living on a starvation income that is catastrophic, as we artists need our hands to function and to make enough to eat and pay all of our bills. I’m finding it harder and harder to do those things and I have been falling through the cracks, not able to compensate quickly enough to do what needs to be done.
I’m shifting my jewelry-making methods to some techniques and materials that are easier for my hands to work with such as textiles. The flower in the picture at the very top is the first one I recently made. Although it took quite awhile to finish and I may need to change my method a bit, I was able to use a Kanzashi technique in this brooch (it took me way too long; about 8 hours), and used a button covering tool to create the center using a beautiful maroon paisley velveteen fabric from a pair of pants that got snagged on a piece of metal. I couldn’t wear them like that, but the majority of the fabric is very usable, as the pants were still quite new when they got the tear in them.
In hopes this may help others, I will share what I’ve been doing to try to cope with this loss of fine motor function and the trauma I suffered at Emory and to work around it. I’m not claiming this will fix everything, but it sure does help cope with things that come up on a daily basis and it adds joy to your life!
There are days when I’m not up to doing anything at all but sleep (or try to), and sometimes I cannot even get on the computer, but on the days I can manage at least that I have found that watching art technique videos (branching out to learn new techniques) is great for rekindling inspiration and to lift you out of a dry spell. It’s kind of like storing up solar energy on days you can’t “do” for the days you can. It lays the groundwork for the next step so that you can continue on, and it gives you ideas on how to solve problems you didn’t think of before.
Our culture puts so much importance on “production” and “doing” that often not enough emphasis is placed on planning and proper preparation. Sometimes that lack of preparation and planning can cause things to fail. Someone may have been in too much of a hurry to see an end product that they didn’t spend enough time in the contemplation and calculations phase of a project.
Watching how-to videos is a good “passive” or “low-impact” (on both brain and body) method for re-focusing the mind/brain, processing, and building the bridge between thinking and doing. And unlike a live class, tutorials online do not require you to speak, don’t throw you social curveballs, and generally don’t deplete your already taxed energy reserves. You can watch them without time constraints, and at your own pace, bringing the class to you (and those of us who are bed-ridden know the value of that!)
I flipped around to various ones showing different techniques until something sparked my interest and then I delved further into those techniques. I coud be crying and then start watching some really cool technique and after awhile I feel uplifted and the wave of sadness and grief will pass and before I know it I’m so engrossed in what I’m watching that I have renewed hope with which to take on the life challenges I’m facing.
When evaluating which techniques I want to incorporate I asked myself several questions;
1) Is this something that inspires me? Is this something I would enjoy doing/making?
2) Do I think I can learn/master it to the degree I need? (for me that is so that it is of the quality required to sell it, but to those just doing it as a hobby the expectation/goal may be just to create one at all, or to improve their fine motor function, or just for fun.
3) Do I have (or can I get) the supplies/tools required to make the item?
4) Is it useful? For me that means marketable since I have only me to rely on financially; no significant other with a decent salary. Earning potential has to be one of the top considerations for me for sheer survival, but for those in different situations the meaning of “useful” may vary. It could mean anything from “Is this something I can put on my shelf and look at when I’m feeling discouraged” rather than “This is another object to clutter up my house with”, to “Can I get this finished in time to give this as a Christmas gift to my granddaughter. Will she like it?” You may feel that just the act of learning and creating is useful to your mood, and/or maintaining your interest in life, thus the will to fight your disease/condition.
Whatever the goal, it needs to be your goal, not what someone else (doctor, husband, therapist, friend, or family member) feels “should be” the goal. The whole purpose is to give you a firm base from which to operate, to identify something you can control so that those things you can’t are more managable.
In the end, you, the patient, are the one who has to be happy with the results; not anybody else, because they don’t live in your body, nor do they really know how your brain works better than you (even if they might think they do).
Art has always been my saving grace. When nothing else was going right it was there to give me something to hope for, when nobody in my life understood or cared, art let me be me without judgment, in the wee hours of the morning on many occasions it has given me solace and lifted my spirits, kept my dreams alive when I began to lose hope that they would ever be realized, and the colors, shapes, and patterns would create an image in my head of beauty and love and wholeness.
My disease(s), and my neurotype’s (Asperger’s) downside is/are still there, it is not a “cure”, not does it “cure” the injustices that have been done to me, all of which are very real and call for change in the practice of medicine, but art bridges the gap where modern medicine and the fallable beings who practice it fall short. It’s better than any therapy I could enter into because it honors my own process, doesn’t require me to leave my brain and autonomy at the door, and I’m not relying on somebody else to do my thinking and processing of information for me. When it comes right down to it, art is a way to stay engaged in life, it allows one to connect with others of like mind in the way you work best and in your own time, on your own terms, set goals (or not, if that is what’s right at the time).
Its benefits are deeper than just creating a tangible material object; art is a way of working out solutions, keeps the mind open, encourages the brain to learn and process information, exercises memory and motor function, and maintains a sense of wonder and discovery (important when you are required to think outside the box for your own diagnosis and treatment. Last but not least; it gives one a sense of accomplishment and self-confidence.
In the final analysis, the Dark Man and his lackie female resident (and then Emory itself in its corrupt mismanagement) took something away from me that can never be fully restored; a large piece of my belief that doctors and those who employed them were fundamentally good, in the field of medicine to help patients. Perhaps I gave them too much credit for having a heart, or maybe times have changed so gradually over the years I didn’t notice that a different sort of person is becoming a doctor nowadays and that the Marcus Welby type physician is becoming a thing of the past, replaced by motives of self-interest and sacrificing patient care, doing less work to save or make more money. Whatever it was, one thing was for sure; something about Emory’s management had changed over the past year. I’d been there 13 years without incident until I was made a pawn in Administration’s internal politics.
In the emergency room that day and evening I was subjected to a sick and twisted game; something I wanted no part of. I am not that naiive that I’m unaware that there are “consenting adults” who play these sadomasochistic power games in the privacy of their own homes. While I don’t understand personally the infliction of pain and fear and why anyone considers that a turn-on, I leave them to make their own decisions, but the key word is “consenting”. Legally if both parties agree to do such things with each other that is their choice, but I was not consenting to be beaten and interrogated under the guise of a neuro exam, nor for my foot to be pounced on. I wasn’t given a choice, and what’s worse is that the other two doctors (licensed in the State of Georgia) in the room witnessing all this as The Dark Man carried out his cruelty just stood there and let it happen.
This sadistic neurologist abused his job and medical license, crossing serious boundaries to bring his own personal issues into his work and then when I didn’t just go along with it he incited his resident also to bully me in ways that will likely affect the rest of my life. The only thing I consented to was a professional examination to help find out what was wrong with me, and instead I was taken advantage of in my weakened condition; lured, tricked into something I did not want, and abused and violated just as surely as a woman who has been date-raped.
Those of you employed at Emory who supported this abuse actively (or passively) with your lack of concern for my best interest, by doing nothing about it and allowing me to be institutionally revictimized for months after the physical abuse incident tool place and whom thwarted justice once it was reported to the proper authorities will always be looking over your shoulder. Always remember that to keep such a corrupt system in place places you in the position I’m in now somewhere down the road when you, God Forbid, need medical assistance for something that’s not so simple to identify nor recover from.
Those of you employees who stood by and did nothing when it was brought to your attention are not blameless “innocent bystanders”. Those who pretended to care yet sat on your hands as I suffered and begged for your protection in all honesty are not good people. Good people step up and make it their business when a patient confides in them an incident of abuse, and especially if they see it happen!
The most un-therapeutic thing you can do is convey to someone who has been abused that you don’t believe them, treat them as if they’re wasting your time, and then sit on your butt as if nothing needs to be done. There’s nothing more discounting and disrespectful. Then for the corporation to double-down on the perpetrator’s side and to refuse to be accountable, issuing lame non-apologies adds further insult.
Denial and refusal to render aid to the victim of what amounts to an assault is not how a good doctor or facility provides support to a patient and it’s not the proper way to correct a systemic problem that runs rampant in our society and disproportionately targets women in a male-dominated system.
The “secret” you think you’ve buried by expelling me will follow you forever, because you see, it is not I who caused your problem. I only reported it when I became the unlucky target.
There is a serious systemic problem if those who’ve experienced such incidents are the only ones speaking out and when we do we’re rataliated against by the very people whom we are supposed to be safe to turn to when things like this happen.
To those who did this; You may think you have dumped your garbage on me and left me alone with its wreakage after smearing me with your filth, but in the end nobody really gets away scott free. I do believe Karma kicks in eventually.
If my son has to continue this mission after my death to see that things are set right and to give the next patient this happens to some real recourse, then so be it. If it’s the last thing I do in my life I want to put a stop to the practice of institutional bullying in medical settings.
While I wait for the wheels of justice to turn and for my medical evaluations and treatment I’ll create art . Art (which is the antithesis of man’s baser nature) renews, comforts, and nourishes me, giving me the strength to persevere toward better quality of life though the odds are stacked against me. Strength isn’t just something you have in your muscles, but is something you carry in your very spirit.
Today I’m finding it difficult to do simple things like grasp ice and put it
into a glass or to fix a salad. My hands are fumbly and will not respond to what I want them to do. The motor slowing is pretty significant today especially in picking up small things with thumb and forefinger. Yesterday I felt faint again on and off all day and somewhat this morning for a few hours. The new GP wants me to see another local neurologist while waiting for these more advanced specialist appointments. Not looking forward to that at all, as it still scares me even to think of how they’ll react to seeing the poisoned medical records, that and the neuro exam they always want to do the minute you walk in…Uggghhh. You can believe I will be doing as thorough a background check as possible before I walk into anyone’s office!
The continued decline is alot to adjust to but even if I should lose all the function in my entire body I will still be a strong woman because new buds are forming and the truth is on my side.