My Stint as a Medical Refugee

The following is the true and witnessed account of the events occurring at the UW Montlake Center.

Names of my care angels are listed, but I have reserved names of individuals who have inadvertently and accidentally caused me harm. Some of them I did not ask purposefully.

 

ACCIDENTAL DISCOVERY

MAR 4 2022
My appointment with my doctor, Dr. Kirschner in which she orders thoracic MRI to get a current picture of my thoracic spine, which continues to be problemataic since the blunt force spinal trauma I sustained during my time serving in the Gulf War.

THURS MAR 10
MRI at Jeffco Main hospital

A phone call after this emphasized that new MRI needed for a "shadow" top of last one. Request forwarded to VA for immediate action.

TUES JUNE 14  
Three months later, MRI Jeffco Main hospital.

TUES JULY 19  
I have a call with Dr Ferreira, UW neurology, telling me I have a meningioma bilaterally on the crown of my head, its location on my saggital vein, and that there's a 3 month window before it is 100% occluded. He asks me if I'd been having symptoms, we talk about trying to differentiate 25 year back injury from a parietal tumor that has similar signs. In any case, he says not to wait, that he has a good surgeon who can fit this into his schedule quickly if I agree to the surgery. He said no other protocol would work quickly as we needed it to, since it was discovered so late, so I agreed.

MON JULY 25  I have a call with Dr. Ruzevick, an MIT grad and Johns Hopkins repute; we scheduled surgery for August 26th. There were other procedures they would need, an email with details was forthcoming. When I advised I have a few complicating conditions from my Army wounds, he assured me a nurse would call me for pre-operative instructions and to answer my concerns and prepare me.

FRI JULY 29
I received an email from a floating care coordinator, thomasxx@uw.edu

WED AUG 3
I return an email to Thomas alerting my team to a transportation difficulty on one of their many additional and necessary steops, and ask again who to speak with regarding the severity of my conditions. Never did get a reply.

THURS AUG 18
Made 2 calls to 206 598 5637 given in UW correspondence seeking a resolution to the one appointment conflict. Monday the 22nd they scheduled a COVID test that required me to get my sick little body from the surgical campus to a testing site near the Northgate Mall at 12:10 and make it back by 12:45 for my 1pm doctor appointment. This trip depending on traffic can take an hour or more and I would have to take public transportation in my condition. Without the test on Monday I couldn't have the angiogram on Tuesday the 23rd, and the whole schedule would be delayed an undetermined time, and by this time their estimate of remaining life was 6 weeks.
No replies.

SAT AUG 20  
Made a call to 206 732 3200 spoke to a few operators and one w said she would call me back with at least someone who would know what to do. She didn't call back.

SUN AUG 21 

Made calls to:
206 724 4489
206 726 1717
206 547 2369
800 568 2705
206 732 3200
206 598 5637

CARE COORDINATOR WOES
Somewhere in the notes, I have written my actual care coordinator was Ty, and I forget if one of those is his number or if I was transferred to him, but he was the person tasked with coordinating my care. I explained the seizures and other medical needs that seemed to be at odds with this particular part of their schedule, without provision for getting me there or an alternative for very ill people. His response was that my refusal to take a test would mean a cancellation of my procedures. Then I asked him why he was misquoting me and threatening to divert life-saving medically necessary treatment, and that there has to be some way to test me for the virus in the hospital. He said  and they make EVERYBODY travel ten miles north of the hospital to a PARKING LOT to get a nose swab that has to be then securely tested and delivered BACK to the hospital, the same hospital who was telling me how ill and close to death I was. He just kept saying there was nothing he could do.

MON AUG 22  
I got back on the phone, called
206 598 5637 x 2
206 59 9460
206 520 5055 x 2
206 732 3200
finally I spoke with some angel who had literal footwork to do, but finally got me authorized a COVID test that would be administered while I had my pre-op blood draw. She told me she wrote it in my notes of the electronic file, but cautioned me that the notes stack, so tell whoever is looking it's at the bottom.

TUES AUG 23
At the in-person pre-op with (nurse?) Anna, she asked me about medications and supplements, and cautioned no NSAIDS some days before the angiogram, which for me was the following day!  I asked her why was I hearing about this now, I may have taken some considered inside the disallowed timeline. She told me they would have to reschedule all my procedures!  Again in tears, I asserted these were life-saving measures that don't have much leeway, which was when the COVID test came up in the conversation. She said there were no notes authorizing a change in their protocol and now they definitely had to reschedule me. She asked why I couldn't just follow their directions, and I because I was between seizures at the moment, I had to explain  that I'm EXTREMELY ILL and have severe symptoms, especially seizures, some severe enough to cause open head wounds. Her reply was "Well, you made it here, didn't you?" Yes, from the hospitality building 3/10 of a mile away, I said, and had two seizures. How many were medically acceptable to get a COVID test, in her opinion?
After my insistence, she scrolled to the bottom, and found the authorization after all.

This is the same person with which I had to then entrust with my pre-existing conditions that they needed to know. But I was ready with my notebook and gave her the residuals of the back injury:
 
Myofascial Pain syndrome, Joint Hypermobility Syndrome and CENTRAL apnea, which is different from obstructive sleep apnea. IF I'M NOT AWAKE MY BODY DOESN'T BREATHE WITHOUT ASSISTANCE. I cited two sleep studies, one  at a Franciscan hospital, the other in the UW Medicine Sleep Clinic, that showed I wake up on average 22 times each hour, presumably due to progressively shallower breaths until a threshold causes waking. I emphasized it is due to this that they MUST WAKE ME before extubation, that I've done it before and  it is especially necessary after anaeshesia, VERY IMPORTANT;

vagus nerve damage, which has negatively impacted the sympathetic and parasympathetic responses, given me Multiple Chemical Sensitivity Syndrome, Fibromyalgia/Chronic Fatigue -- all of which when overstimulated, result in engaging my panic disorder. Symptoms progress to shock and shortly after, seizures; past complications include: organ infections, sepsis, shock, SEVERE panic attacks, and syncope;

gastroporesis- my own doctor in Jefferson County and a naturopath in Seattle have been helping me deal with the residuals of chronic dehydration and malnutrition, which needs to be taken into account when reserving food and water from me.
 

I asked for NO NARCOTICS AND NO MUSCLE RELAXERS due to their extreme effect, demonstrated time and again. Anna seemed to be taking at least some notes, not agreeing or disagreeing.

WED AUG 24
Angiogram scheduled 9AM
Did not eat much day prior due to gastroporesis, already beginning to have some signs of shock. TV screens in waiting room advise that if appointments take longer than 15 minutes to call you, inquire at the desk. Waited until 9:20 then made inquiry at desk, but response was that ALL angio patients for the day are called in at the same time and taken in order determined by doctors. There was more but my convulsions began and I lost conciousness.

**NOTE NEEDS TO BE MADE that when I woke after this procdure, the staff was right beside me and extubated me right then just as I had requested. It was expertly done, and my breathing became less labored as the anaesthesia wore off. Kudos to (I think it was Dr. Walker's) team!

SAME DAY

Results of the angiogram seemed to set me up for surgery the very next day, which was a day earlier than scheduled. They explained that something the doctors saw must have made them want to get me in sooner. For this reason I was not to eat or drink after 10 pm tonight, which left a tiny window for food. I couldn't eat much and sometimes what I could eat would come back up. I was already hungry and weak.

THURS AUG 25 9AM
A doctor not on my team came in, advises my surgery is going forward as scheduled on Friday, the following day, so no food after 10 pm today. They told me they were going to discharge me so I could sleep at the hotel, eat out, and check in an hour early for my 5AM MRI the next day, but I asked if instead I could just spend the short remainder of time resting in place, since as I've tried to be clear that MOVING causes great pains and seizures, and they let me. At least I got to eat.

FRI AUG 26  
Blood test, MRI, surgery

NARCO-LOCK
The surgery took apparently about 4 hours. Narcotics were used, as was protocol, as they told me later "you would have been awake and screaming during the operation." Instead, I woke up on a moving gurney surrounded by staff all giving me their own sterno-rubs, calling my name and trying to get me to breathe. They had already extubated me and I wasn't breathing or waking up so they kept shouting louder and rubbing my solar plexus harder. I could see their nametags, watch the light changing as we rolled through the hall, and I could certainly hear the panic when they talked to each other about what to do next. I couldn't move a single cell, but I could feel their various knuckles of different sizes, angles, takiing turns crushing my solar plexus, bruising me, just about to crack bones. About then, someone had put some oxygen on me I think, and with all my soul I reached my left forearm up just as a new person, a sweet nurse I had just met the day before, was about to give HER sterno rub and all I could do was curl my fingers and let my arm fall, scratching the back of her hand with my fingernails. She cried out, pulled back, and said, "That's gonna leave a mark." But at least they stopped.

 
AUG 27 - 30  
ICU with awesome nurses Tiffany, Liz, Cristina (and others) floor 5
These nurses were instrumental in the first few days after the surgery, since my systems were trying to adapt, poorly without much nutrition recently. I had checked in with the surgical team about the IV drip, and it was not a glucose solution but a more keto-friendly solution, which helped immensely as sugars exacerbate many inflammations. They went above and beyond making me as comfortable as they could, with ice chips and little extras, even holding my hand when I became overwhelmed with all the somatic discomfort, noises and lights.

The doctors came by and told me I was a good candidate for in-house rehabilitation once the insurance approved it. People came to work with me to get me mobile asap, and by the last day in ICU I was standing up 4x a day to wash my face, brush my teeth, and doing muscle strengthening leg work. Toileting required a strap under my arms for safety, arranging the bedside area and bedrails, and a nurse assist to get onto the commode. I had no feelings of fullness in bowel or bladder so made trips every couple hours to prevent accidents.


FRI SEPT 2 7PM  
moved to Rehab, Floor 8

FALLING IN THE CRACKS
The nurse Gina who put me into my room apologized for the difficulty getting me settled due to 1- ICU did not technically discharge me, they await insurance to approve in-house rehab; 2- Rehab dept could not then technically admit me,  and 3- this was happening at a shift change, day into evening -- AND a long holiday weekend, so they were having trouble getting hold of staff or get the info about me they needed.

DELETED DATA
The nurse also informed me whoever undertook this action also deleted my patient data, so they were unaware of my details, history at the hospital, or any medications. The medications prescribed included an antibiotic, an anti-convulsant, a steroid, a pain reliever, and heparin shots in my abdomen.

MENTAL PATIENT
Three shift changes over the next day or two, I heard the nurse on duty inform the new one that I was PSYCHOSOMATIC. My visitors tried to comfort me telling me it was probably in reference to other patients, but a nurse confirmed to me that it had been written in my chart by staff.

NO BATHROOM
When Gina was getting me settled in I mentioned that there was no commode in my room, and asked how I was to relieve myself. She showed me a "wick" which is a cucumber shaped device that begins to vacuum when liquid is detected, and then wrapped my bottom up in a bath towel sized absorbent material (a giant diaper) as the nurses were transferring me to the new bed they had another pee pad underneath me. My instructions were to pee myself then call the nurses to change me, and when I needed to poop they would hold a bedpan underneath the cheeks while I was still supine. Without physical therapy OR bathroom privileges, I was just supposed to literally lay there until my insurance approved the rehab.

CONTROLLED SUBSTANCE
Since I couldn't bathe or shower, I asked to have some peroxide to clean myself with, but I had to get a lecture on how dangerous this stuff is, watch the nurse dilute the 3% by half water, only to be handed old fashioned wooden pick swabs for my ears... the caution and clucking I got over that request still boggles my mind, how so much caution was taken over my ear cleaning and so little was paid to my actual disabilities and special needs. I was told "I'm not supposed to leave this with you but I will."

SAT AUG 3
I still hadn't resumed medications due to nurses unable to reach staff. I began to feel a great ache in my left chest, then became unable to move my left arm, and we called for the nurse. They still hadn't gotten my info. I began to have a seizure. A crash team was called in, and I heard Gina explain to the doctors on call about the deletion of my visit history. The doc in charge asked me when it was all over what they could do for me to make things better, and I told him to care for this disabled veteran like my life depended on it. Later one of my team's doctors came around to see me, but when I asked for some diagnostic to rule out any dangerous blood clots, due to a persistent chest pain an unusable arm, she told me no, she "didn't want to run any unnecessary tests."

SUN AUG 4
A volunteer woman got me into a wheelchair for the first time, and she wheeled me around the floor while a nurse brought in a shower chair. The sweet volunteer offered to wash my civilian clothes while the nurse helped me attempt to shower, but it was a short time of me rinsing myself down with the showerhead, as I had no postural control at that time and kept almost falling out of the chair. There was no way for me to clean underneath my fingernails, and since I still hadn't been able to wash my hands since the surgery, there was dirt and skin from scratching the nurse and probably fecal matter from wiping myself poorly the first few days after surgery.

MON AUG 5  

Grade A nurses Colleen, Monica, Kendrick, and phlebotomists Steven and Kyle

WHO ORDERED THE JACKHAMMER
Kendrick came on shift about the same time of morning that construction began on the 7th floor, just below. Some type of jackhammer or drilling into the concrete. My whole head was reverberating painfully, and there was a type of odd terror running through my skin from head to wherever my sensation ended in my thighs, that caused a type of convulsion I had not yet experienced, and I begain to flail around. At first I was offered a sedative, or earphones, and between gasps asked if I could be moved to a different floor, but since I wasn't still assigned to the rehab folks, they had no agency regarding me other than recording my vitals and neuro checks. Kendrick asked open ended questions and we came to ameliorate some of the effects of the banging with blankets and whatever other means we had available to us. The construction went on for 3 days and fortunately got a little farther away each day. Even the nurses were frustrated that the drilling didn't happen over the long quiet weekend, and there were only 11 of us patients on the 8th floor.

LIFELINE
The rehab psychologist Dr. Nick Dasher stopped by and listened to my concerns for my care, since I was going to be here for another month or two working hard on getting better, I would not have my dad the whole time to get me what I needed from the store for nutrition and palliative aids for the special needs for my vagus symptoms. He promised to have a talk with the administration regarding consideration for my pre-existing conditions.

THE REAL CUSTOMER IS REVEALED
The doctors came by every morning to update me they were still waiting on insurance. They could not put me on anyone's schedule to get therapy until 1) insurance came through and 2) I had to be entered into the Rehab system. The young doctor in charge of the rehab unit came by a couple times, telling me each time that I was still a rehab candidate, hang in there.

MON /TUES AUG 5/6  

ATTACKED IN THE DARK IN MY SLEEP
Uncertain of the date, but in the wee hours of the morning when the phlebotomists take their vials for the 7AM doctor meeting, a small man entered my room as I was sleeping and my dad also asleep in the cot beside me, and poked a needle in my arm without waking me, getting consent, or even asking me who I was, turned on zero lights, and didn't even speak to me.
I cried out, and my dad woke up, and asked what was going on. I asked the lab coated man if he was a professional, and he replied, "Huh?" I repeated my question. He said nothing and just left. Using the nurse button, I called the nurse in and complained about the situation. The following day or so, Steven, who regularly drew my blood, walked in and I told him what happened. He said something to the effect of that was the last time he could stand to hear this story, that this person is known for this. He asked if he could have my permission to file an official report, and I gave it. We put my name, patient number, date, and request for intervention in a plastic protective bag, sealed it, and he took it to his superiors.
The nurses make a plan to thwart this hospital worker from entering my room again, and the next two nights he returned but was in once instance escorted out by one of the traveling male nurses when I pushed the nurse call button, and the other night Monica diverted him before he could open the door. They called it a "training issue" but I never heard back about my complaint, no administrators stopped in to talk, and I really could have used some counseling.


HERE'S YOUR SIGN
Also in this time, from the first 24 hours on floor 8, I had gotten some whiffs of strong deodorant or detergent and notified the nurses of chemical sensitivity, which can cause me to have convulsions. They made notes and put a sign on my door. Every day there was someone with strong scent of some kind, never perfume, that brought on seizures until the input was taken away. One day it was during breakfast, when my dad had left to get my food, housekeeping came through with strong floor cleaner. To her credit, she worked quickly, but the deodorant hit me about the time she was done, and as she left she closed the door behind her. Some minutes later, one of the nurses who was walking by my door heard my faint plea as I lay in the bed seizing, and she helped me by opening the door and I asked also the shower be turned on for a few minutes to clease the air with steam. We had to do this a few times during the week when new staff came in my room without reading the sign Gina made immediately for me the first night.

ORDER UP
My concerns about nutrition I raised with my surgical team were never adressed. The menu for patients is mostly carbohydrates and cardboard, lots of fat, and had no alternatives for vegetarians. My dad bought me breakfast each morning and kept me in bone broth and other suggestions from my two naturopaths who I had paid to come to my room to help me at my urging.

RIOT ACT
One person claiming to be a therapist entered my room as I was coming down from one of the seizures, still trying to catch my breath and get into some level of homeostasis. She introduced herself (Barbara?) and began trying to interact with me, without referencing my great heaving and bodily distress, facial cues, or the toweling of my brow by my dad, who was helping me reconstitute myself. My inability to speak immediately led her to make further inquiries, to which I held my index finger up to indicate I understand, and to give me a moment, while whispering out that I had just been seizing and need to catch my breath. She told me she and her staff are very busy people and when they come by, I need to be ready to work, ready to give them my attention! I asked if she would allow me to breathe, and she informed me she did not have time, if I wasn't ready there were other people who are waiting, and there is no telling when she would be able to come back. Since post seizure time is crucial to stay calm, I told her she doesn't need to worry about coming back, in fact please don't.

NO FIRST AID TRAINING
As the swelling was finding its level, sometimes various body parts or systems would temporarily start or stop functioning, and one night neither of my arms were cooperating to get food in my mouth during the small window of time the gastroporesis was letting me eat. I called a nurse in, asked him to help me with the last few pieces. Although he seemed to try, he was admittedly bad at it and some ended up on the floor.
At one point I needed a sling for my arm to keep less weight pulling down, and went through 3 nurses all unable to fashion one from my safety strap. A fourth person came along and got it done immediately, I don't remember if it was a nurse or visitor.

PRN RX
there were a couple things the nurses were able to get for me, such as Tums, Tylenol, a couple others, that I had asked for and they had gotten permission for me to use/take. The requests turned into prescriptions that they were supposed to ensure I took, and having occasional upset stomach and taking what one needs at the time is what the nursing industry used to call PRN, "as needed." The nurses said now PRN means that it is added to the list of meds to be taken every time meds are given. They kept bringing me all of them but I refused to take things that I requested on their timeline. They stopped bringing those but it was hell to get it straight that I only needed antacids when my stomach was upset, not when it wasn't. They coudn't seem to grasp it.


WED AUG 7

IT'S ONLY A PANIC ATTACK
A therapist named Laura took me to the gym to exercise my legs. After her assessment she had a few moves for me to try, and she stopped when after a couple minutes I had reached exhaustion. She cautioned me to observe and respect my limits and be kind to myself, and said I was still a candidate for in-house rehab. There was nobody in the whole gym at the time and I knew there were only 11 people on the floor so nothing was triggering.
The next therapist was a nice man named Brandon but recent seizing, lack of ability to control my sympathetic and parasympathetic systems, and joint hypermobility had left me in a weakened state and I was not able to get dressed when he visited. He took me to the gym too, only this time it was in full swing, with maybe 20 people all dressed and working out. My panic disorder kicked into high gear. A lady on a treadmill saw him wheeling me through and when she saw my huge eyes and white knuckle grip on the arms of the wheelchair, she motioned her concern for me to him, but he waved her off (without checking into what she was trying to tell him) saying "She's fine, everyone is okay," but I was immobilized in the chair unable to breathe until we got to the back. I tried hard to stay focused and on track, but my already weak shoulders had been carrying ALL my weight since the surgery due to numb legs, and I couldn't perform what he wanted on the parallel bars. I tried to tell him I wasn't ready for the Olympics yet, and he wheeled me back to my room, leaving me with the assignment of 'standing knee lifts to chest' exercise. When I asked him how this is possibly appropriate for my level since I couldn't stand, let alone move my legs, he said "For when you're ready," and left.


LIKE A HANDGUN IN THE GYM
When the surgical team came to update me on insurance status, I mentioned my panic disorder is on greater edge being even more disabled than I'm accustomed to. Various environmental, physical, and mental stimuli combined poorly with not feeling heard or understood. Some staff had taken the time to hear about being crippled during the war, then losing a child and a husband, home and health to that cursed event so many years ago. They were the only ones who understood the intestinal fortitude it took for me to be there. I explained that there are mental reasons I need assistance and preparation before going into ANY CROWDS or noisy reflective places, or bad things happen, to me and/or others around me during violent panic times. The doctor responded with, "Everyone goes to the gym." In  fact, when she realized I was describing my first gym experience, she said that she had me moved to this floor with the purpose of going to the gym regularly. When she understood they hadn't been working with me at all, she left immediately.

I spoke again with Nick the rehab psychologist and explained that none of my warnings in the pre-op discussion have been heeded, and now bringing me in a crowded room in a hospital gown and in pain was like bringing a loaded gun into public, since none of us knew if or when it could go off. He said the administration had agreed to hear me out and there was going to be a conference.


THURS AUG 8 9AM

CANCELLED
One of the student surgeons who had been with the group but never interacted with me showed up by herself. She never did introduce herself so I don't know her name, but she obviously drew the short straw and came to me to say I had been taken off the candidate list for rehab and was instead going to be recommended to a skilled nursing facility. I asked why, and she told me I had my insurance to blame, that they are taking so long that all my forward progress has been lost and now I am welcome to stay until the VA can admit me to their nursing facility. She didn't know answers to my other questions and ended the short conversation saying, "Sorry, I don't know. Have a good one!" turned on her heel, and got out.

After collecting myself, I notified the staff I would be leaving on Saturday, and requested discharge instructions and medications be prepared. I began to carry out my own PT schedule and appropriate exercises that I made up as I went along.

FRI AUG 9
More inquiries into discharge preparations went unanswered. A nurse told me he would page the charge nurse and get back to me. After a couple hours I had my dad load me in a wheelchair and had him wheel me to the desk nurse and asked the same questions, saying I'm leaving in fewer than 12 hours and I have no more answers.  Perhaps because they hadn't actually checked me in and didn't want to tell me.

RECORDS STILL DELETED
When I brought up my concern over the loss of in-hospital records, staff assured me the permanent record would have it all, and the nurses were just unable to retrieve anything prior to my arrival on the 8th floor. Even so, the pharmacy who was tasked with preparing my meds was unable to see what they needed to issue my meds. Nurses said the records are transferred to MY doctor and that she would be able to see the whole thing. As of Septempber 28th my doctor still was not able to -- she can see that I checked in, and that I checked out, but not what happened in between.

SAT AUG 10 9AM
The nurses had informed me I would be taking steroids for a couple months after discharge, but this morning they said I didn't need them anymore. The one medication they said I absolutely DID need was not covered by insurance. Luckily my dad was able to pay over $50 for a couple weeks' worth of the anticonvulsant, while at my own pharmacy $35 covered 3 months' worth. It took until noon to get my medication, and with some words of care and advice from Monica on keeping up my good work, I left.

5 HAND IVs, 16 BLOOD DRAWS, 24 HEPARIN SHOTS
During the time on floor 8, the needle they insisted keeping in my hand for "emergency seizure purposes" kept coming out or getting sealed over, and each time they tried to put it back, staff would blow the vein 2 or 3 times and have to move it to somewhere else. I told them it was due to being dehydrated, and began to hydrate an hour before they came in to alleviate all the clots and bruising. Some of the nurses used insulin needles to administer the heparin, so I began asking the others to think about doing the same since I had MANY bruises on my abdomen and arms.
No matter how many seizures I had, sometimes multiple a day, there was no usage made of my needle they insisted on keeping one in my hand. When one night it had come out yet AGAIN the nurse just decided to leave it out, since I was about to get added to the Rehab floor for real any day and would not be able to participate with it in (even though they had tried a couple times with it in place). She didn't seem to agree it was necessary. I must have had 20 seizures during my stay but no meds were ever administered through the hand IV.

NEXT CUSTOMER
No fewer than 7 different calls had gone between myself and the radiology dept regarding the follow-up MRI. The hold messages referred to not patients, but customers, as in "Thanks for holdinging, we are assisting other customers."  The person calling the 8th time on Oct 11 to reschedule confirmed not a single one of those calls left notes, even though the last few swore to me they would.They questioned the system and apologized every time, but seemed so confused. Each person I spoke with seemed harried, tired, and on a palpable level, some fear. They seemed concerned that they would do something wrong, that if we were having this talk they had already done something wrong, or that I wasn't getting what I wamted and their customer service reputation was on the line.
When I asked a morning shift nurse how to get the check out process started, she wanted me to be more specific, and when we couldn't get to a common understanding of what I meant she at least tried to move the conversation forward telling me a nurse would help me with all that when it was time. My response was it's time now, I'm ready and you are not. She asked me if I wanted the social worker, and I asked if that was the procedure -- but each question of mine was countered with not an answer, not even a response, but another question. The point of the conversation seemed to be to keep me calm or address my feelings. It wasn't feelings I was concerned about, but plain old information, and none of the nurses knew what to say about how to check out. They could have told me they needed some time to figure out how, since again they didn't have me checked in, but to their credit, even with the point-blank verbal bludgeoning, they didn't once say, "I don't know," no matter what odd things they came up with to hide it.


AT THE END OF THE DAY
The things I have written here make me wonder why they operated on me at all; being just six weeks away from a total eclipse of my heart. Previous conditions made me a horrible risk for this surgery. Add to it, as they told me more than once, they had to kinda take the organ out a little from the skull, which can cause more complicatioons... in the doctor's words, "You've had *some* surgery." It is fortunate for me and my family that they didn't just put the mess back in and apologize to my dad for not having found it sooner. For my part, I feel fortunate that some happy accidents saved me for the time being. My point in documenting and sharing is supposed to help the PRE and POST the surgical team performing its miracles. To do so takes nothing away from Dr. Ruzevick and others in their fiat, something that could have easily turned out differently, worse, in so many ways. 

It is the before care and effectiveness of aftercare that led to great suffering, not the operation. And not all aftercare was bad; I told the nurses who gave top-notch care every day how much I appreciated them. My mother and her grandmothers were nurses and healers, and are who left me with their own standards of what constitutes care, but they are no longer here. They would have raised hell more than once, and I want to say they could have protected me and cared for my ailments the way they should be, the way they were taught, but even my dad being at my side 23 hours a day could not prevent things or reason with authorities, or FIND authorities (people with agency)-- the nurses over my time there confided they didn't feel they had agency to perform nursing duties, their hands were tied all manner of ways -- and that they were sad and aware that many surgical patients tough out the surgery but don't survive the aftercare and die within weeks. They see the industry has changed, is hurting patients and tying hands of medical staff, and lining the pockets of pharma, while catering to their REAL client, the insurance companies. They have the power to withhold, the power to approve. How they make those decisions has been under much scrutiny, and found lacking in fair practice while REAL LIVES are affected, altered, ruined. Until we can halt special interest monies, there has to be something one can do to get CARE and avoid TORTURE without labels or political implications, because if not -- and this is what we put up with -- ask yourself how and when a person CAN expect to be treated properly, without so much needless harm? What kind of system is rewarding this model? What kind of responsible government allows even one more person to suffer these daily atrocities? I suppose only until it happens to someone they love. Someone important. Someone else.

A Stillness That Refuses All Else

 

 

 Current climates have put our ideologies to many, many tests. How have we been holding up? Is focus sharpening within? Are we un-learning the hypocrisy taught to us (Leo Buscaglia), or contributing? Depends on the day! I wish Leo were here to remind us of those human things. Maybe these posts are my odes to him, my way of continuing his devilish advocacy of radical compassion and unconventional understanding. And long-windedness! Everything needed to be said though, so coffee up & belt in.

CURRENT PARADIGM AWARDS that have served extra duty recently:

1. Begin Where You Are
   - do something that has no barrier to its completion,  distance or resources
   e.g. -- mind exercises, isometric muscle movmement, story creation/memory
      *accomplishing something generates momentum, motion

2. Ride the Rainbow
   - when mental altimeter spins, identify your color, and see what else you can be
   e.g. -- can you see the edges between red and pink? blue and seafoam green?
      *facility with lateral (e)motion generates Agency (Buddha)

3. Heart to Heart
   - Listen to this Kenny Loggins song! healing souls through the ages
   e.g. -- being distant, then revealing it's from a feeling of loss
      *the way to a solution is acknowledgement and humility

In recent months, my bodily challenges flared up to more than I could handle; I was trying all my stand-bys, meeting with failure each time...  I became scarily exhausted... wrote a will... my strangle grip of panic was spiraling down, cutting me off from healing thoughts and absorbing vital mental energies. En route to the ER during a bad episode, a semi backed into our truck at an intersection, and then drove away; an odd water incident was unknowingly stealing the precious remnants of my family photos and irreplaceable belongings that have been saved through thin and thinner. The VA was pulling their shenanigans, running me thither and yon, labelling me mental and using it to deny the physical... That old saw The Resource Ratchet was tightening screws in all the places where I had lack. Spiritually a pile of bricks seemed to bury me. Nightmares of getting squeezed out of existence. Why do I feel like the leading role in a Robert Rodriguez version of Ed TV?

Turning to Doing the Next Indicated Thing (from the Traveler's Cloak post), I was surprised how often it was... to do nothing. Rest-- real repose. Not just some limitation of chance interruptions, but a stillness that refuses all else. In a key moment of mindfully suspending my disappointments, automaticity suddenly brought up an old forgotten piece of information, right in front of a doctor! It turned the tides for my health. Big hooray! But only because of the hours I practiced unclenching the mind fist that kept me contracted. I kept finding not just obstacles ini my path, but roadblocks, washouts. They were signs my paradigm was not grounded in truth. Trying to be that honest with some things was like being afraid of heights and looking down from a tall bridge. Being present asks us to acknowledge the mountains behind us, as well as the mountains to come. Perhaps one experiences stillness of mind only after everything else has churned the shit out of it.

There must be others like me who have somatic, mental, and spiritual wounds, who have had to 'Doctor Manhattan' themselves together time and again... you know, the guy in the graphic novels who had a physics lab accident and had to literally think his way back into existence from being scattered around the universe...  I have not been able to find a primer for this, and so am writing one. Years of research and application to share with others wandering in this forest. It has taken much personal work, and I have been very angry for a long time. So I keep refining, polishing, until the mirror reflects only what is. Stillness and depth are correlative for a reason. Depths and scary lurking thoughts can reveal things... Finding 'pay dirt' meant more work to be done. Flashbacks begin, and just like that, my positive person/self construct is in jeaopardy; my chosen reality erupts in confusion as painful reality demands light and acknowledgement... I am left wondering how to fit this truth into my paradigm. What algorithm in my programming is ruining my life? 

Chronically ill people have horrible, predictable bouts of depression; yet we keep believing we can think our way out of it, as if something just needs to fall into place. In exchange for receiving the minimum of help, we are always subject to someone's approval. As a prior national service officer, I used to tell my fellow disabled vets, stunned at the holes in the system and crappy choices that sounded insane, that the world-upside-down they were feeling was "a natural reaction to an unnatural situation."
I put another paradigm together, It breaks too. Made sense that the only way to bring any consistency to my life was to wrap around the truth. The TRUTH, duh. Okay, how do I do that, when everyone's is different? Measuring a crooked stick with another crooked stick seemed futile to me.

So, moment by moment, moving through these seemingly endless circles...  It can be exhausting. What you've heard about "doing the work" is true. We must re-choose everything, renegotiate our relationships to be mutually beneficial. ALL of them. To fun, to family, to food ... until you have answered all your questions and feel equipped to move about, able to handle what comes. Moving in the circles, I suppose, is how we are presented with 360 degrees of choices of where to spring forth, and make the circle a SPIRAL. Spirals are life. They are always moving, either growing or pulling apart... changing things and allowing adaptation. We are growing or we are deteriorating; sometimes both in different ways. People and systems can lie, but the spirals they leave behind bear witness.

Much rest is needed! This work can be heavy; the smallest kindness is cherished. Changing requires our permission -- our cooperation. I went through the 12 steps of the Program, singularly and without meetings, acknowledging Anger as my addiction. First steps were relatively easier, in hindsight, because then I hit Acknowledging a Higher Power. This was hardest for me, a recovered theist and atheist both. Science became the vehicle to seek higher truth. The simplest laws were my building blocks: objects prefer to stay in motion or at rest, information/matter is neither created nor destroyed, the universe tends toward entropy. It allowed me to correct many assumptions and even begin predicting some outcomes regularly, which is something ables take for granted.

Finding the ability to look objectively at longstanding paradigms -- my Truth, finally -- has taken the longest time and been the hardest to see. Now that I have acknowledged some of my most cherished hurts and listened to my deepest, infected and grown-over wounds, I understand why it was not possible for me to SEE before, much less to heal. In my working life, I was unable to take a helpful amount of time off; living month to month on pain wages, tolerating and drugging as much hurt as I could for my jobs. One day I collapsed, and was down with major symptoms for a month. The doctors were too busy arguing about what to call my condition and wouldn't sign off on me returning, and I lost my job. I refused to be homeless in the city, so I used what resources I had and followed through with some connections, landing up in the mountains to fight the VA for going on the 25th year.

This is all a recipe: mis-, dis-, or un-treatment --> an unbalanced organism; organism attempts to just make it to the next rock, but is it a sinker or a floater? Resources have precise caveats that split hairs, create hoops that were harder than having an actual job. How long can strained favors bend? In this way, friends are consumed, and bridges, and your friends' bridges... A human alchemy of specialized, commodified skills & experiences, family and friend circles, when subjected to the algorithm of changing events/needs in the world, and it only takes a flip here or a switch there, and BOOM! a successful, career-minded person somehow becomes home-free. None of the promissory notes cashed in, private or government, large or small, not for vets or women or ability dependent. Finding out that most every instance of "we support our vets" and "bring them home" was for the people they see on TV, not for broke-ass, family-challenged, unlucky ones like me. That was 2017. Since then, many horrible things have happened. But I have also had a chance to find a community in some of the smallest niches, and so feel blessed in many respects, too.

All some of us have left are our feelings and opinions. Those can become like children tugging at us, needy and unable to submit their requests in writing like professionals. But give them room, a voice, and an amount of free time, while you ask better questions in a detached way -- as if for a good friend. If you come up with some possibilities, try enacting them gently, when you have some bandwidth and a spoonful of try in your pocket. It's okay if it's not right away. YOU have to be the parent! Part of you may know what to do but is drowned out. Instead of letting high erratic emotions go on too long, or get unhelpfully spun up, give them a time-out, however you discovered is best when you were sewing your cloak. But sometimes, just sometimes, they are upset because you KNOW the correct path of action and are either unable or unwilling to take it. They can be right for trying to get your attention. I think I understand how cancer can be an illness of a thousand disappointments. Knowing what should be done, what is the healthy thing to do, but not having the intermediary mechanisms to achieve it -- from lack of time, money, energy, medical staff, and a million other things.

If you can't make any headway, ask yourself HONESTLY if there even IS room for there to be a win. The answer may be a surprise. Often when we have the courage to look, it means we then take on the burden of fixing it. Denial can be a defense mechanism, that really means I don't have enough to go around right now. The key is discerning, like the Serenity Prayer asks, between what is in your reach, and what can be disengaged for the moment in order to tend to important things. Prioritization is not denial. How many times have you heard people NEEDING to quit their job or go off the deep end, or are bordering on illness? What if you are forced to choose between having a job, and having great medium- to long-term health?

It is seductive to squander youth, but only because health can be forgiving; and due to genetic predispositions, what have you -- the able-bodied won't have the same looming threats as people with special needs: like work noticing your frailties, and the extra time it takes to do certain things, perhaps unofficially using them against you... We thought it was bad when not having team support meant you were last in kickball selections, but in this American adult world, those same people are able to use the same selection process when it comes to workplace politics. Now the world is experiencing all the things we vets have been crying out about, that our systems are fragile, unfairly weighted toward productivity, and in some places, cracked or broken altogether and not intended for widespread or long-term use. When the system is done with us, we fall off all the radars and no longer count as unemployed, underserved, or underhoused. There is no way to count the thousands of people not caught by any services, but I see tons of them on this here Olympic Peninsula all the time. Before, during, and after being upset that human beings aren't treated well and with every technology and understanding available, we still have to chop wood and carry water, and live.

When your attempts at managing your disappointments consistently meet with some wall or other, give yourself permission to plumb those depths, but safely. Recognize what it means to be patient, longsuffering: feeling badly, and yet, still do what needs doing. Pockets of hidden ego, cut off from healthy periodic inspection, inform tiny decisions. You know you're in their presence when an internal argument sends your humility into hiding, and you take an indignant posture instead of through the soft focus of judgement-free understanding. Take a moment to see how far up on the high horse some old ideologies may have hoisted you. Some go very far back. Deep rooted beliefs. Forgiving that sometimes the dearest friends, family, and trusted medical personnel can do great harm with the best of intentions. Allow yourself a sigh or cry of acceptance. These attachments that hurt us have also been our company for a long time. Be grateful and remember that they delivered you here, as you send them along.

The thing about cracks is that they subtract people from the conversation when they are most vulnerable: jobless, no health insurance, staying with friends on the couch, trying to make it back to safety. It is an all-day job looking out for oneself in the wild, where the nets of society have failed, and wits are all, unless one is lucky in the family-can-take-me-in department. For most, our voice is gone, our votes with dollars is reduced, everyday resources become a godsend -- it takes a lot of effort to do much more than try to be comfortable. I saw how tied I was to the circus, performing to stay employed as long as I was able, yet not getting the right help. Only after one leaves the cult can they see it truly. Refugees need the right support.

When there IS any voice to be heard on the matter, it is our neighbors, whom we live amongst, commenting on not wanting housing or shelter nearby for any riff-raff dumb enough to end up on the shitty end of a very shitty stick. The argument goes silent when the fact comes up that many of us are vets and/or in need of some sort of care, but there is no place for non-productives in this country. I'll go further and say the systems are designed to make us go away. It is known.

Poor diets and corporatocratic, ever-faster ever-more requirements and demands are setting this country's people up for a giant wave of disability and disease, as has been prophesied by nutritionists for decades. The medical system is admittedly geared for extreme disablement treatment, not for those living slightly "off" and needing to be treated gently, wholly -- this is not pharmaceutically profitable. This sounds kinda ranty, but all these factors caused a perfect storm of cracks that I MYSELF fell through, no second-hand media-fed rumors. One year I'm making six figures, the next three I can barely walk. It can apparently happen to anyone, and only those with means and family resources will survive, or those like me who are stubborn and resourceful in equal measure. 

Being a well-reared perfectionist with a top-notch work ethic, I had a lot of anger to work through when I couldn't be ME anymore. Previously such an active person, a trauma which should have paralyzed me instead left certain tissues to degrade in a manner unrecognized and difficult to treat. Friends go hiking without me, family doesn't know what to do with me...  with mom gone, the world became graceless, unforgiving, and unwelcoming. The less a human is able to do, the less they are able to fend for themselves, or get loving care. Cruelly, those who need the most help are also ugly reminders of the cost of our lifestyles, getting swept to the corners. My veteran brother said once, we basically gave our lives when we signed, relenquishing any claim to basic humanity foreverafter. He told me, "Sis, it is our burden to be the hated, the forgotten. I know that I'm still a good person in my heart."

As you can see, there was a lot for me to let go of, or even wanted to think about. Things I couldn't fix, but still gave free rent for occupying my upstairs. For just some moments, though, I let myself suspend the hellish reality I had been experiencing, to give my mind a break from focusing on a cramped, tangled knot. It helped free some processing power that was running in the background, unchecked and draining me. I imagined a place, small at first, where I was welcome. Where the lifetimes of my different experiences were woven in with a community, one who wished me good things and felt fuller for having known me. A place where I could contribute and be a neighbor. When I'm on a roll, I expand that to a whole town full of this, this soppy, corny, cheesyness -- but it felt so light to be there. I could breathe easier, I could imagine good things coming out of my interactions, and not be so reclusive. Just making room for it, I guess.

It served me to be able to a put the brakes on the worn-in path spiraling down. It is important to have a physiological break. Get a treat, read a funny, find a moment to yourself where even YOU aren't judging you, let alone anyone else, that you can ground in. This should be completely possible, but is so much harder than it sounds! self-care comes out of self-love. There is an undercurrent of poor self-worth in communities where resources are doled out via a system of judging and approving types of existence. We learn to think of ourselves and each other in the way the Machine sees us, and must endeavor to unlearn dis-care and begin demanding to be dealt with as a human.

The better I got at disconnected observation, the more clearly truth became visible. Suddenly I could admit fault freely, and engendered honesty in others. Only when the lake was drained did I identify my personal attachments to the outcome. This meant looking in the face of things I thought were good in my life, that ultimately kept me from moving forward. Before I went in with my "tweezers," I waited for a set of days where I could give this pain the room to unravel. This is also part of self-care, honoring that until then, you can try to triage your wounds in the meantime in order not to lose it and complicate your situation. Sometimes you get the choice, sometimes not. Be there for yourself when it does, like the bestest friend and advocate. No judging, only listening and protecting.

Increasingly, people are showing more Parking Lot Kindness, and some heroic community deeds! The contrary is also true, that pain and suffering follow the magnification principle, but this is not to be resented. We could distract ourselves with why, but the non-resentment part is how you disengage. THAT is the real work. I practiced inanimating a situation inside a clear blob so I could function while studying it, like the Ironman lab holograms, I tilt and turn, zoom in, connect ideas, and give space to make something work there first, where it didn't have the ability to hurt me or scare me anymore. There is a little meeting room in my mind where all sides involved are discussing and suggesting potential solutions, and in a supportive way. If peace with our struggles is supposed to be possible, it is only after being successfully imagined. Giving the situation permission to actually work out is the first step to it being able to change in life, even if it isn't right away.

These things refuse to be hurried, and are seldom honored by the world. This is where the Cloak comes in. How is yours coming along?

Nerds Abroad

When we find allies as precious as gems, who also have gems, well it's worth shouting about! And so it is with the colorful math rocks I discovered when I needed dice for my first campaign. Some of you know I have been learning how to play Dungeons and Dragons. It's been touted for many fun experiences and helpful brain exercises. I was first underwhelmed, then later intimidated by, this game for a long time,;but I decided to bite my bullet loaded with social and bodily anxieties, and give it a go. What were the chances my disabilities would let me? Would my brain fog prevent me from making the decisions I need in a timely manner? Could my monotonous discomfort spill over in the form of taking too many breaks and interrupting the game? Should my character be a boring avatar of my lameness, or a predictable super-able champion wish story? Because I had not yet played, I still thought in this digital way.  

To me, this was another possibility, one of experiencing the rare state of enjoyment for me again, albeit at the end of a long list of other previous possibilities that failed. But I had spent a long time preparing myself, I didn't just jump in blindly and chance corrupting my efforts before the tender leaves were a little weathered!  Three or four Lone Wolf games. Five years' worth of the Critical Role and other podcasts snarfed down in just over a year's time. Then a trusted friend and DM/GM gingerly walking me through the game mechanics and options... I had to work hard to make room for the reality that it could turn out, and that I might have a good time. That hadn't happened for a LONG time, since certain disabilities grew in their power to make my life suck, and the whole world became my enemy. Those of us beaten down by life know.

I say this because someone has to. Nobody can tell you where, or when, or why you still come up with some try. I know it hurts a lot to see that part empty. Sometimes you need to rest until you can come up with the tiniest amount of it, even if that takes a long time. Try to see forward when you are looking back at a defining moment, and ask what you would like to remember? That I let my emotions fly, and how hard it was to clean up after that hurtful hurricane, or maybe that I held my poker face for just a few seconds here, a couple minutes there, until the moment changes again and someone or something else is in the spotlight, After a few successes, I began to be able to rely on a little bit of consistency in the world again. Each day I asked myself if I was ready, and each day the answer was No. Until it wasn't. One day my answer was yes.

And so no shit, there we were, reaching through the interwebs to put together a little group of people who also wanted to play a tabletop game (who ended up being all veterans, what do you know). The learning and social interaction, both in-game and out-, has been tremendously awe-inspiring and enjoyable, and given me every chance to virtually work on my cloak (referencing previous post The Traveler's Cloak on mental and physical self-work). Although I will admit the more stories I hear about people gaming it, the luckier I feel to have such a great group! 

And if you are on some path or other that uses gaming dice, do I have the nerds for you! 

They are fans of D&D, travel, and all things nerdy! Female and LGBTQ owned! You can see their shop HERE at their supply store, but make tea and cookies! There are pages and pages of glorious photos, videos of rolling dice, and links to communicate with them about something you might have in mind... they are mercifully raising the happiness quotient of the world, one set at a time (or more, like me...)!

These dice are great to handle, if you have a feel for that sort of thing like I do... the struggle is real! Fear not, these do not disappoint. They look delicious, of course, each in their swirly-dirly way, but are surprisingly substantial and still dynamic, both in hand and on the table (or in the tower). Out of respect for the dice, I did not photograph the gift sets, only my own (after I got their permission). They are mesmerizing and I find myself searching for excuses to roll them out of game, so I used the 8 elements of the Bagua to create a divination game for my Druid Monk. Dice happened to be one of her proficiencies to boot, so now she gets social interaction activity points by doing "readings" for players -- in game and out!

A review of the dice by name --

HELLISH REBUKE looks like how red-hots taste, warm red magenta sparkles that just POP on the map boards  

PURIFY embodies magic trapped in resin... each rainbow-y iridescent facet just looks like miracles are about to happen. It is tempting to underestimate them, but they are also sharp-edged and serious! 

HEALING WORD  are nice rolling, and have a sparkly peachy warm glow that could equally end up being mistaken for candy -- but you wouldn't be able to look at them in your mouth.

PLANE SHIFT is currently my favorite dice to use, on account of the larger-sized dice, medium edges, and gothic font - these are a joy to roll, easy to read, and OH YES look just like labradorite, my favorite stone. Dude.

ZEPHYR STRIKE is red pearl swirled with white pearl, with ribbons of silver flake twisted throughout -- sharp-edged and weighty, like precious cuts of old polished granite gemstones.

ELYSIUM  is a wonderfully curated color palette of soothing greens, yellows, and purples, and so smart in a color theory way too, as some might notice. Looking forward to more artful options in this style of combining sets! I shall make inquiries...

EVOCATION are pretty incredible to get lost in, good thing for me they were a gift to someone else, I wouldn't get anything done! They are like faceted water of various depths, and a solid on the high number on each die, which are easy to note in the heat of battle. And so pretty.

GENTLE REPOSE are my favorite dice to handle, and I play with them for no reason - rolley polley edges, white and amber whorls gleaming like petrified agate, with surprise pink sparkle. They are complicated and fascinating, comforting to hear and feel, and relaxing like ASMR. They are pictured here, so lovely...

 

Pass on to anyone looking for special dice for their game, character, friends, or any of a million reasons. The variety of price points let me spend what I was comfortable with for the players in my current campaign, sets for my druid monk and her in-game game, and for rolling out my dungeons. That's right, I'm goin' for it!

The thing about voting with our dollars is that we get to spend resources on a quality product that pays forward to underrepresented groups to boot, instead of lining corporate pockets. So few pockets have personality as it is.  Hooray for finding such a gem amidst this pandemic!

 Great Job!!!

~~~

... Then Maybe I Can Give It Back

 

 Part Deux

How do I look back at the loss of potential relationship with my relatives? How can I blame my deceased mother, searching for her own place in the world as a 10-year, post-last-child accident who was raised by her siblings, for leaning into it?  Moreover, how do I look at myself? How much was I leaning on the teenth percent to belong somewhere? I always thought I would find out my tribe someday, and then! Then I would finally belong. This world has not been kind to me, and I had TOTALLY identified with the ideologies of Red People, also being pushed around, marginalized -- not always out of existence, but always out of sight, out of mind, out of care. 

 

Silly me, the upstart that I am, I was going to change all that! I have an art degree, a vision, and just about to WILL my dream into existence. I just needed my studio. I had plans!  I have a whole tab on my shiftnext.space website dedicated to The Legacy Project, trying to bring a sense of mixed identity pride into the 23rd century. That was my vision. What is it now?

In the growing of new feathers (reference the Icarus post), I have found that who we THINK we are is at least, if not more, important than the biology in our veins. Partly nature, partly nurture, we are indeed a construct which, at one point in time, begins to show more of our own making. Which meant it was MY job now. I wanted to know, and now I know.  And you know what? There was a time for GRIEF and a time for SEARCHING. When it was time for the Cloak, I began with the number ONE.

 

I'm still exploring the craft of movement, and the physics of a human mind. I still have relationships with animals and places, and dream about Bear Spirit. I still talk to the sky, and the earth, and ask the trees questions. Recent interactions with people, some familiar and some not, have revealed to me just how much stock I have put in OTHER people putting stock in ME. It is a hard lesson that when someone becomes 18 and here, legally responsible, alas there is no magic wand that turns all you have learned and all your experiences into BING! healthy, happy, responsible choices. Those are muscles, emotional ones that take "time in the saddle" to develop properly. So it's okay if I go slow.

And I realize that, while people who have various body and chemical trauma residuals are inadequately equipped to navigate current systems, it is precisely because they are the ones least served by those systems that we are perhaps best poised to lead society into the future. The problem is that as Magic People, our Spells are only temporary, they can take all of our Concentration, and can only affect Willing Creatures who will allow themselves to be Touched.

~

If I Can't Take It Back...

 

 

 Hello, my friends, and thank you for being here. Guess now is the time I get to write this, it is so difficult... I heard a wise man say that wounds need air. This is me attempting to model and form neuronal pathways in heretofore unchecked territory... and another opportunity to use my Cloak (reference The Traveler's Cloak post).

Many decades ago, when I was in the single digits, my aunts and uncles came across a family secret and blew it open. My Indiana farmer predecessors, farming there since the 1600's, had mixed with the Red People and kept it a secret. We were part Algonquin, which seemed to explain certain features and thick, black hair. My grandfather kept saying, "I ain't no prairie n---!"  He probably just wanted to keep his family fitting in, after generations of genocide. I remember arguments, family going against family, in a gradient of feelings on mixed race, and what did it mean anyway? Some trying to teach Gramps how to adapt to diversity and inclusion, while to others it didn't matter, only what you did with your life regardless. That what makes you isn't who you are. If we got this far without knowing, ...


Many family members tried to hunt the few teeny tiny strands of history that could tell us who we were so we could belong. Mom just began embracing anything Indian. Well, anything she liked. I was told that I had a proud heritage and that I should acknowledge it; we are still here, and representing not unquietly. Great Uncle Arzie and Great Aunt Fern died before anyone could get anything out of them, if I remember. Grandma died soon after, then Grandpa died, going to the grave in denial. Parts of the family have died off not talking about it or acknowledging it. It was divisive, and I've always wanted to get to the bottom of it. Enter the pandemic, stimulus money, and Ancestry.com.


The results came back. Nope, no "Asian" blood detected, which is how they categorize indigenous peoples on this continent. I had to immediately talk to my ex-husband and current friend, since he was there at the time, experiencing all that with my family. He thought it was quite interesting, in his clinical physicist/computer genius way. My dad and brother weren't hung up on the idea and didn't express any sense of loss. But my moccs... ? Now would be considered appropriation. My artwork, my thin connection to a rhizome of time... wasn't true. The chorus of spirit winds I thought were my ancestors, now silent. Not now, mama, not quiet now! Were you ever there? Why was I feeling hollowed out? How could I end up statutorily canceled from a culture who didn't know me anyway, in which it turns out -- hey! I am not welcome



And OOPS, I. Never. was

 

The Traveler's Cloak

It has been said that an inability to SEE a way out is what leads to suffering. The prescription thus far has been to just tough it out, just keep at it, hang on. Some of us have conditions that require consideration outside others’ experience. It is indeed no simple task to find ways of healing for people who don’t fit into neat boxes. Neither is there any scarcity of vague palliatives or specific inapplicable advice. We are missing arms, legs, parts of our memories, the ability to pee normally; we are on the fluid scale of skills, abilities, and identities. We live with less stability and more variety than most. We care about growing as people and being a part of a community, but not at the expense of our souls. We are used to not being loved, but forgotten. We get no validation, and little to no representation. 

Perseverance isn’t what I call it. That implies both choice and effort. We employ neither. Give up or don’t, we don’t get to leave. We don’t get to stop. There is nowhere else to go when doctors and spirits fail. Mom used to say, when I got mad or sad, that I had the same clothes to get glad in. That is a deeper statement than appears on the surface. The Legend of Kung Fu mentions a cloak, a metaphor of psychological health protocols. This is for those who would move more comfortably, more confidently, more freely in this world not made for us; to use our minds and our lives in ways that expand our ability to interact with the things we choose… and things we didn’t. 

Give up a false sense of security for a true sense of identity. 

MAKING YOUR CLOAK  Just like any article made by hand, there are a few general things to think about: A pattern, materials, tools, and care instructions for after. Making something as crucial as a cloak for long term travel requires much due diligence on all three. These ideas must collaborate to be functional FOR you and sustainable BY you. When you have picked a pattern, you must select a proper fabric for the job. You must also consider the care required as appropriate. The least exciting parts are also the most important to your success. 

As a person with some sense, I was confident that given enough opportunities and enough doctors, someone would be able/ interested in helping me as I was others; alas, the disappointment after years of searching carved hollow places in my soul. I exhausted the lists of phone numbers, resources, and oh, the specialists! The best! Top in their field, yet had no idea what to do with me, and so they shrugged their shoulders — and still got to go back to their homes and families. My efforts to stay working failed. The resources to help those like me were for other people, never for me. Must be a drug addict for this program, must be a male for that one. Years on wait lists. 

So I follow the trails to the sources of the incompetence, the failure, the misguidance. While I ask better questions, I arrive at the lowest common denominator by realizing that my somatic organism feels endangered, and fears death — sounds simple, yet took so long — and not only were authorities NOT concerned, they had many expectations of my performance! It is easy for people to overlook that many people are working under wounded conditions, operating from wake to sleep in auto mode because lots of things are asked — no, demanded — of us, things that are counterintuitive, non-supportive, and often harmful. 

This undertaking takes more than blind work, it takes understanding of the elements in action. Tailors craft using the most effective combination of fabric, grain or weave, thread, which stitch, accessories, and purpose. And so it is in this way, partly by pattern and partly improvised by you, that your cloak takes shape. Rejoice! There are many resources, and the tools are few. Sew confidently in the direction of your dreams. 

WHEN TO CUT, WHEN TO STITCH, WHEN TO WASH   In the spirit of our metaphor, these are the tools in my kit that never fail to move me forward. There are many other terrific implements that I have picked up along the way, specialized to my situation and even invented by me, but these could replace them all. They’ve been my patch kit for years. 

Do The Next Indicated Thing (Victoria Moran), 

Do Something Else (Tony Robbins), (NOT the same thing) and 

 Try Not Doing It All At Once (Tony Robbins). 

At first they may seem like beige versions of the same idea. They will feel very different in practice. Each time I’m spiraling down, I find I have violated one or more of them. They are engines that shake doldrums and elevate from ruts. When you feel stuck, use another. The simplicity might not impress you, but the flip of it means flexibility. Those of us who suffer from certain attacks just want to hide until we feel normal. In a haste or panic, these can facilitate your focus. 

Remember to be kind to yourself when metamorphing!!! These muscles are usually weak to catastrophically atrophied. Look at the results of your initial attempts in an after-action review to see where it went, and be honest about why. It is so very easy to throw out a new tool and very difficult to look at the effect your handling may cause. Unwind your ego, and let part of you argue against, and see what tracks, what is repeatable. As your proficiency for learning changes, some tools are being upgraded while you are tweaking others. If what you try doesn’t appear to immediately be useful, be patient and start with tasks that can stack a few in the win column to get your momentum going (Tony Robbins). 

 

 TEN+ PATTERN SUGGESTIONS The great thing about having a list like this is that your interests and skills change over time, the list will also seem to change and offer variety when it is just your perception, as with a movie you view again after time, seeing with a new set of perspectives. Some resources are older than I am … but stand to every test I have put on them. 

  ONE – The ONE thing, from the movie City Slickers – Curly (Jack Palance) says life is about ONE thing, you just have to figure it out for yourself. Identify a simple core driving concept and it informs your smaller choices. Robert Downey Jr., in an interview, describes an acting tip given to him: ask, What’s my action here? By the end of the scene, lots of dialogue and events happened, but there was an idea in the beginning that fed the choices. The larger idea facilitates choosing the paths that contribute to your goal.   

TWO – the Yin and Yang duality. Notice that each has a piece of the other. There are a sea of dual-natured examples to work into your cloak. It also encourages change and retooling as part of the process. 

 THREE – this one is appropriately a 3-fer. All were too good to leave out. 

3 states of water – very helpful in envisioning emotional states for self-understanding. Changing states can avert spiraling out. People who are variously abled must learn that yes, there are moves tied to moods, which you must adapt to your abilities. Using physiology, biology, psychology… development of this mental muscle is key. It demands nothing less than your complete awareness and honesty. Even less than perfect practice yields immediate results, if you DO them. This is the fastest biofeedback result and useful in emergencies. It is also the most important, as any sewing needle not able to hold thread is a hinderance to progress. Mastery of your own thoughts and responses leads to moving forward in strength, from a place of neutrality and thoughtfulness. 

3 things you can change (Tony Robbins) FOCUS, MEANING, and ACTION. These are decisions under your control. Changing the meaning I subjectively assigned to things was a TOTAL game changer. Even and especially when I was SURE that I knew I was right, I ended up being wrong sometimes. Since that is new to me, I was having a big ol' tent prayer confessional problem. Only when I was humble enough would I ask. Only when I was quiet would I hear. Only when I agreed to investigate and accept what I found, did I see. I may never truly know some meanings, and must decide how to live with that. I neutralized the unhelpful meanings I assigned using scientific concepts, and my actions became more clear. Lao Tzu says when you are one with the Tao, not a finger needs to be lifted but there is nothing left undone. It is like that. 

 3 things to assert your agency (Saroya Chemaly) – things to tell people when you are receiving verbal unfriendliness, as appropriate: * I just said that, * Stop interrupting me, * No explanation needed. 

Being marginalized creates great crises in agency for the People. We also know in this fashion that whomever would deny us respect -- even in their verbiage to us -- cannot be expected to grant respect in their treatment of us. This includes your doctors, your loved ones, your lawmakers… Respect is shown through speech AND DEED. If you study neuro-linguistic programming, you see people are shouting all the time. Translate. 

 FOUR – the Four Agreements by Carlos Castaneda. Be impeccable with your word, Don’t make assumptions, Don’t take anything personally, Always do your best. 

Be responsible for knowing the history of IDIOMS you use. Not only is this extremely educational, you will avoid speaking harmfully by accident. At one time I used to say “mumbo jumbo” to mean incoherent or meaningless babble. Later I thankfully learned that it is what the slavers picked up while the People were lamenting to God in their chains. I don’t say that anymore. 

 FIVE – Nikken Pillars of Health! write them out and keep them around!!! Healthy mind, body, family, society, finances. In that order of importance. Not just where to buttress any lack, also what to consider in your decision-making. 

SIX – There are six basic human needs: Certainty, Variety, Love/Connection, the need to feel Significant, need for Growth, and to Contribute. (Robbins/Madina)

SEVEN -- Habits of Highly Effective People, by your friend and mine, Stephen Covey. Post them in your view. Learn how to look for opportunities to use these tools. Once you begin to see the payoffs, they become their own reward, and it spirals up. 

8 – The Eightfold Path, by Buddha – now in stores. LOL. 

This is a biggie. Lifelong lightworker stuff. When you are ready to choose growth over decay. One digestible way of working through this is getting one concept at a time, wrapping mind around it through studies, making art, skeletizing the practice… then moving to the next. The steps of the Noble Eightfold Path are Right Understanding, Right Thought, Right Speech, Right Action, Right Livelihood, Right Effort, Right Mindfulness and Right Concentration.

9 – Nine Squares, by Roberta Macdonald, MS LMHC 

Draw the tic tac toe chart and fill each square with a life focus: e.g., family, work, fishing. Just another way to organize what your core important matters look like. A regular check in with them can chart changes in your focus. Patterns can emerge in many places, happy and sad. 

If you have difficulty narrowing them down, that says something. Limit 9. 

If you have difficulty coming up with enough, also says something. Minimum 9. 

 

ABSOLUTE /0/ (science) 

Science defines this as complete entropy, as cold as it gets, no further apart for atoms to go. This is a term I use to indicate the real-life equivalent of a D&D subdual hit. It takes a player’s hit points to 0. They are not dead, but unable to act. The complication is that you have 3 chances to roll high enough to luck out of it. The game gives it to chance, but multiplies your opportunity, albeit to just 3. Danger may still harm you, and you have as much chance to fail as to succeed. This euphoria often happens after BIG blows, traumatic events that leave us senseless. The result is a full reality pause, Sherlock Holmes movie style. It is a type of steady state where all things are equally weightless. 

Big pictures require a more distant perspective. Visions take development, they don’t happen on their own once born. It takes contemplation and awareness, expanding the structure in your mind, and mentally making room for new ideas to be possible, even true. For me it was that point on the hospital table, preparing for the last moment my body could possibly go without oxygen. Then those moments on the floor, in the tub, in the car, at work… right before I was sure I was dead. Did I take care of everyone? When I got really upside-down, I reminded myself the sun has come up 100% of the time so far. Sometimes I could do nothing but stare at the ceiling and wait for the tides to turn. 

But they turn. 

 

Gathering Bees takes time! — John Byrd 

 

Patterns take time to show themselves, and can come from unexpected sources. You must put in the work to chart changes, or lack thereof. Keep re-imagining different ways to interpret the data and question the meaning you assign it. If the situation seems off when you switch the parts or players up, heed that. Keep asking better questions. Better answers lead to better decisions. 

 

That old sign in grade schools sticks with me to this day, and now I’ve seen it’s true: 

Watch your thoughts, for they become words; watch your words, for they become actions; 

watch your actions, for they become your character; watch your character, for it becomes your destiny. 

 

SEWING CLASS IS IN   This is a project whose use may not be immediately apparent until all pieces are in place, but you may enjoy putting it together and getting to know yourself. Play a Lone Wolf game series all the way through, (takes but a day!) and make your skills and disciplines into tactile pieces you enjoy. Add more visual representations for your real life training, skills, abilities, special items – you might be surprised what’s been hiding in your real toolbox you regularly overlook! 

Make a Dungeons and Dragons character profile including rolling out your six traits (strength, dexterity, constitution, intelligence, wisdom, and charisma). After playing these games out, you will learn how to put your best foot forward,assess and navigate danger, and see where your choices and chances take you. I fashioned and decorated a simple cardboard insert in my Franklin-Covey for my collection. When a life event increases or decreases any of your scores, acknowledge that!!! As you work on real skills, add more icons to represent them. Consult your toolbox while brainstorming in real situations. 

But most of all … Survive. The rest is negotiable. 

 

I’ve never known Hope when it wasn’t on a diet. – Captain John Sheridan 

 

THE AVIATOR’S RULES in order of importance: 

Aviate 

Navigate 

 Communicate 

 

An unexpected tertiary effect of retooling the logic machine inside us is that for much of our lives, something asked us to take bullsh*t as normal and acceptable. But once your own cause and effect is honed and you are on your way to mastering it, you will notice this is not copacetic in the real world – you must proceed slowly, developing THOSE new coping tools as you go. 

Keep sharpening your questions, and facades begin to disappear, and you must then deal with the reality of some overwhelming things. It is similar to learning enough vocabulary and syntax of a new language until you can interact effectively, then realize the horrible things that people regularly say to each other. 

 

It is no measure of health to be well adjusted to a sick society. – Jiddu Krishnamurti 

 

A variety of neuropathies, genetic predispositions, and ultimately a poor diet and/or fitness , I’d say, leaves the majority of Americans — whether naturally or artificially — deficient in true personal somatic repair, but still required to perform at work. Then you realize those millions of hurting, saddened people are in charge of heavy equipment, your government, your children… I certainly know how I feel in the morning, and have yes been in positions of responsibility while I’m in chronic pain. 

As it was so well put once, people don’t seem to have permission to be old, sick, crippled, or anything but productive for the machine. The thing we are all afraid of (death, disease) happens to us all the time, but it’s expected that we push through it, and without so much as a healthy instructive on how to do so (well, because there isn’t any). 

But when we do, something happens to us. We see it in animals that are forced into whatever we deem for them mostly without consent. They get nervous conditions that in human terms would be OCD, depression, or anxiety, and will hurt themselves — and so much so that there are tools sold to people with animals in this distress — not to alleviate the animal’s suffering, but to minimize the damage that happens to what they can only consider their property. 

In PEOPLE, this type of living causes psychological fractures and influences how we see themselves, each other, and the world. Once you forgive that about yourself and begin to heal, you will truly see the people around you. They have trouble getting enough oxygen, water, rest, nutrition, trying to find moments for themselves between one emergency and the next… it can be a troubling new dimension of your process that needs care, too.

 

 Free will exists, it’s just f*ckin’ hard. – Dolores Abernathy 

 

 EXPAND YOUR KIT   Do the work, put in the time, log your hours in the saddle. Write down your triggers. See how far back you can trace the unhappy thread. What can reroute it next time? Notice I did not ask CAN it be rerouted, that answer doesn’t forward our momentum. Use questions that transition you to a better understanding. Most of the time, gold is only found after much unfruitful labor. You have to face a seemingly simple realization that the questions you are asking are actually coming from a place of such incredibly deep bias, many tight blindfolds must be worked loose first, and acknowledged. 

Your protocol for something is not as important as whether it works, and that you use it. Track the reasons a process succeeds or falls short. Pay attention. Journal it. Journaling for either a scientist or a game campaign is essential. How many times did you take a shortcut that cost more later and didn’t admit it? A spiral can be slowed easily when you realize things went wrong due to your own faults. Sure, you may still get upset at yourself, but you can transform that into mindfulness, instead of disenfranchising yourself from the universe or your loved ones with drama. 

You will know you are on the path when it feels like work! Like a pain in the ass, and hard. The muscle of discipline is built doing difficult things day after day. You can’t buy a bottle or go to a one-weekend seminar. As much as I have looked, this here is the only idiot’s guide to being disabled that I know… 

 There is a breaking point, which will migrate as you learn, where you max out your learning curve. But also remember that commandment to take yourself off the hook of being perfect, at least for today. When you are most sensitive and triggered is usually when the most helpful information is revealed!! Being honest with yourself is essential. It is the ONLY KEY that unlocks your AGENCY. It can hurt. You must do the uncomfortable, the impossible! something you’ve never done! then do it AGAIN! 

It is HARD WORK that CANNOT BE SUBSTITUTED. 

 

IDENTIFY the LOCUS OF AGENCY 

What is activating what? at the basest level, there is energy infused into a situation via particle/wave physics, a catalyst. Try putting together some of your most common cause and effect chains, and go as far as you can in either direction, even if one end is always a question mark. This requires strong muscles to be objective, but you must develop them anyway. 

Even though there is a risk and tendency for our minds to think in circles we already run, and become confused, but ultimately our muscles allow us to step outside and expand with such a mind as recognizes two equal yet opposite truths: that we are all completely interconnected, and yet none of it is personal. 

Feng Shui might be described as such – probably why it helps. Only bring things you LOVE into your personal space, things you have time for, when you can truly give care, care the way THEY need. Nobody gets to argue with a wilted plant! it didn’t get the care it needed. Your dog is too ribby, your child is obese, your chickens won’t lay, your friends and family begin to taper off communication, connection. THINGS NEED CARE regardless of our opinion on the matter. 

We all have the same number of hours, so if you’re ragged, time to check on your stitches! Gamers put in more energy, study, and preparation for fun than most do for their real life! In the world of role playing, one navigates an unknown world with unfamiliar attributes and superhuman abilities. As with any new endeavor, one must stay alive while learning simultaneously. Players are encouraged to learn algorithms masked as spells and weapons. Experiences lead to access and resources. Consideration is given to apply appropriate responses, whether in battle or aligning with entities. Can I succeed in this skirmish? Should I use a precious turn to heal my injured self, or assist a comrade in danger… Can I take this hit, and get close enough to vanquish? — CONSEQUENCE COMMITMENT. 

Players go through the game knowing their strengths, and approach situations accordingly. They often travel with a diverse group and co-create responses to challenges, going through experiences together which they can sometimes control, sometimes not. Wins often take multiple efforts with skill and grace in equal measure. Not all damage is created equal! Some are bludgeoning, some are poison… but certain types are lessened due to your particular abilities, a special trinket, or a spell. Players are encouraged to be aware of their strengths and weak areas, and quickly jump to see which aspects are available to them from a host of resources! 

There are many ways to regain points: resting, spells, potions… This is particularly significant to those of us who are counting days and sometimes mere hours between incidents. Just having one nice day is like a vacation, and we bargain with ourselves from time to time what constitutes our standards of “nice.” When you review your ‘days without incident’ or just realize the grace of the moment, do take the time to breathe and anchor it! Eventually those markers will also find their place in your charts, and reviewing HOW YOU ORCHESTRATED IT is helpful — nay, crucial. 

Make no mistake, good days are by design. Great days are usually by happy accidents. Victoria Moran has written many indispensable suggestions on this very subject. A good streak of hours or days are made possible by things partly in and partly out of your control, like rolling a 20 sided dice… but the decisions and actions you choose will set you up for success or failure. I have logged and charted both, watching it unfold in front of me, observing as they happened. There is no hindsight without first creating movement from one point to another; you are creating the metric. Each morning you choose what to take with you and what spells need preparation. 

When you pay attention, you begin to notice that messy jam jar you put back in the fridge was the seed that grew into the sticky homework and ruined bag, maybe ending up with having to detail your vehicle. The step you shorted yourself when tossing the garbage bag that landed on something sharp. That lid you just kinda stuck on the bottle that has now fallen over where you couldn’t reach it right off. Preparing for your day means treating your morning ritual as your weaver’s kit, your brain’s way of getting the tools and spells out for use and taking care of other spinning plates ahead of time. 

Setting yourself up for success and limiting chances of failure are two sides of a coin that still acquiesce to a little random chance. There came a point where I found myself taking the jar off the shelf beside me BEFORE it fell as I open the door, rolling out from the floor onto each stair and reaching the ground, where the top coming off and spilling the contents. To this day I still remember the feeling of elation from averting the same old pitfalls I had well, fallen into over the years of getting too complacent about myself and my surroundings. It was after much discipline in getting the foundation steady. It hurt when I realized how deep some of the changes went, changes that needed to happen and I had kept putting off. 

Yes it was just as painful as I thought. They were only ideas, ones I had made long ago before so much mileage. Didn’t I want to give every chance to my best future? Not just the changes that were easy so I could say I tried? Jedi, will you try, or are you going to get it done? The frame of mind — it’s in the words – will forge your boundaries. You have to break apart some pretty entrenched ideas! Which YOU made over time, and the rest of it. Instead of the old “try, try again” adage, I prefer the new Robbins one of if at first you don’t succeed, “try something else.” Thomas Edison style. 

 

 If this is where we wanted to end up, we all did everything perfectly. – Roger Sterling

 

SOMETIMES YOUR GARMENT NEEDS TO SOAK There are days when each of my planned directions run into pits. Turning to my second and third options sometimes finds them also unavailable for whatever reason. Don’t discount the need to sometimes let fruit ripen. Not doing so is counterproductive, so see to your timing. Learning to do nothing is as important as any other part. We are often our own worst enemy. 

TEST PATCHES Under certain safer circumstances, try out your new ideas, and when you’re ready, venture out. In role playing games and life, being against something can be useful, shows boundaries; but what gets the action going is being FOR something, or ABOUT something. For example, my impersonal, non judgemental knowledge on the plight of forests evokes an extreme emotional response when I see a new cut from my local groves. I reviewed my options, Matrix Architect style, and after reveling in how satisfying it would be to somehow make my mark of disapproval on these sites, decided to join the local chapter of Friends of the Trees. Granted, they aren’t as active as I’d like, but at least I can be involved with some like-minded folk. 

PROTOCOL EXAMPLES: 

MORNING strong blood flow before leaving bed; warm water and lemon juice tonic upon rising; warm ups for muscles, deep breathing, head to toe wake up activity; prepare your action sheet for the day with appropriate goals for your stats; AVOID heavy demands on bodily strength/flexibility, carbs, cold food;  do right by the chemistry – to eat or not; daily hygiene, personal care time 

 EVENING tidy clutter, me-proof whatever I will run into in the dark; balance, guides; hydrating evening fruit, mindful of the chemistry (meaning both ph and glyco-wise); what needs prep for next day? prepare for finding robe and footwear in the dark; AVOID bad news, blue light, diuretics, fizzy drinks/ gulping liquid after 9pm 

TRAVEL  review mental and emotional protocols, bring items prn (lavender sachet, socks, hoodie); prepare for digestive protocols for each end; map bathrooms; peppermint candy in pocket; assess migraine, tension, other headache triggers and adjust course prn; prepare manual assist devices of hands/ fingers, temperature fluctuations; mentally record exit strategies in case of episode onset 

 

Your friends need what you can be when you are no longer afraid. When you know who you are, why you are, and what you want. When you are not looking for reasons to live, but can simply be. -- Delenn