My disaster & crisis prep

This started in my wearing tradition of a friend asking me something, and me responding by writing a million times too much, including multiple digressions and impractical tangents. However, a lot of my disaster-preparedness strategies are psychological. They developed out of survival of a variety of crises both acute and long-term. I cover things that most purely logistical advice for natural disaster prep don’t touch on—but I think at the core of responding to emergencies effectively people need, in advance, psychological skills and mental coping ahead.

In addition to the latest hurricane, many people face sudden and ongoing crises. Inspired by my friend Abbey’s masterful post sharing her coping strategies for chronic illness, here are my (always evolving) ways of dealing with disasters both natural and un.

Poverty and Loss Taught Me What I Need to Survive

My disaster planning reflects my survival of a lifetime of traumatic experiences, caring for dying relatives, an ever-evolving approach to emergencies of all kinds, and the experience of falling into poverty and letting go of almost all my belongings.

In selling off and getting rid of home, furniture, belongings (and through survival) I’ve learned what’s necessary to keep my life and keep it worth living. I live in a broken-down (and continually breaking) RV I don’t own. I have no insurance for my possessions, only my car—without which I can’t get food and treatment, so that is absolutely vital to my survival. It’s the prime thing I have to preserve.

I’ve considered ways to protect my car in storms, where I can store it that might afford more protection than parking outside surrounded by a choking cluster of tall slender easily snapped pine trees. The RV is in a custom-built sturdy shelter that has protected it from falling trees for years. Yet my car is vulnerable. If necessary I can ask someone I know with a garage if I can store it there.

I store in a small portable fire box my vital documents, like original birth certificates, marriage certificate and death certificate for my husband, Social Security Card, my name change documents, emergency cash, and a backup drive of my laptop. Since the fire box lock is broken, if necessary I lash it shut with cords/rope and store it enclosed as possible in case the RV is damaged.

My other vital necessities are my laptop plus an ancient back-up laptop, and my musical instruments. I’ve digital copies of my most treasured books. My writing is stored in the cloud using Dropbox, as well as scanned copies of aforementioned vital documents, tax returns, financial and health/legal records. If I ever evacuate the RV I would take the firebox, laptops and instruments in my car.

Psychological Preparedness in the Face of Disabling Mental Illness

For me, living with disabling mental illness challenges, the most important preparedness for me in any disaster or emergency is psychological.

These are things I’m always doing, especially since I’m running out of money from a four-year battle for Social Security Disability, in danger of dying of poverty, and continually facing crises and breakdowns I can’t afford to fix. I constantly must discern what I can control and prepare for, from what I can’t control—such as weather. Then I focus my limited resources and energy on what is within my power.

My most effective response to stress, frustration, powerlessness, helplessness and regular overwhelming psychological decompensation is identifying things that I can do to make ‘any positive change.’ (This is the motto of the Chicago Recovery Alliance, and at the core of harm reduction methods with which I’ve overcome multiple addictions.) Identifying things I can do centers around an ongoing practice of writing down what I struggle with. Besides putting in words what overwhelms me, I can search some of these words on Google and find others struggling similarly, read and hear how they cope. I save what resonates for me into a database of articles and reading notes with author names and website links, even if I can’t always manage to do what they do with my limitations at the time. Storing information offline preserves things that may vanish from the web, makes my notes more easily searchable, and guards against loss of internet access. I’ve decades of such files. I also keep notes from electronic books and borrowed library books.

Speaking of library books…

Sanity Through Writing & Dissociation, and the Perils of Hope

Since so much of the trauma I dealt with as a child involved isolation and captivity, I found validation and solace in Michael Scott Moore’s book ‘The Desert and the Sea: 977 Days Captive on the Somali Pirate Coast.’ He writes:

“The stress of captivity had turned my mind into a cauldron of contradictory ideas—frustration, self-hatred, surprising impulses to violence—and nothing but the discipline of composition could lead me out of the soup. When I thought about it like that, I could answer the criticisms, in his voice, that rose in my imagination while I sat alone under the mosquito tent, these nightmarish and unanswerable condemnations from beyond the grave. Writing is impractical, selfish, narcissistic, and soft. Maybe; but I had found pleasure in it as a young man because it could reframe a scrambled mind. Good writing could be a release from narcissism, a declaration of independence, a way to order and furnish the mental prison.”

“…hope had become a psychological risk, something worse than a frustrating cycle. It was a breaking wheel, an emotional indulgence with a treacherous downwards slope. It could fuck me up for days. I had to detach myself like a Buddhist from my own desire to be free, the way I had to detach myself during a hunger strike for my profound desire for food. I had to quiet my raging thoughts and quit hoping for any future at all. The discipline was monkish but not large hearted; I just learned to adjust to the shifting currents of indignity with as much quiet loathing as I needed to keep myself sane.”

“…mirth came and went on its own. Which told me that human creatures had the power to thrive in foul circumstances precisely because of the consciousness bubbling up from our limpid core.”

“…prayer did help me articulate my most self-destructive emotions, so it became a way to balance my brain and remind myself of the forces raging overhead. It let me sort out what was, and wasn’t, within my power.

Writing in notebooks had the same effect, and I remembered that the poet Derek Walcott had once compared composition to prayer. ‘Any serious attempt to try to do something worthwhile is ritualistic,’ he said in an interview. ‘If one thinks a poem is coming on—in spite of the noise of the typewriter, or the traffic outside the window, or whatever—you do to make a retreat, a withdrawal into some kind of silence that cuts out everything around you. What you’re taking on is not really a renewal of your identity but actually a renewal of your anonymity, so that what’s in front of you becomes more important than what you are.’

…‘Renewing my anonymity’ maintained my sanity. Epictetus meant nothing else when he wrote about removing your self from suffering. ‘If you regard yourself as a man and as part of some whole,’ Epictetus told his students, ‘it is fitting for you now to be sick and now to make a voyage and run risks, and now to be in want, and on occasion to die before your time. Why, then, are you vexed? Would you have someone else be sick of a fever now, someone else go on a voyage, someone else die?’’’

I used writing as a child to dissociate from a situation in which I had no agency. I created a Walter Mitty inner landscape. I could navigate and control my experiences in words, in self-exploration, in dreamlike fantasy fiction—and give myself my wishes in fantasy. (This was a strategy I read in ‘How to Talk So Kids Will Listen & Listen So Kids Will Talk’ during an “I need to reparent myself” phase.)

The dissociative and selective-attention states I developed during abuse, or providing in-home care for my dying husband for months, or during an accident where I had to haul the 300-pound driver out and administer CPR until the paramedics arrived—these states may have been responses to trauma, but I believe they’re skills that emergency workers must surely practice. I find myself automatically shutting off awareness of emotions.

When the crisis is over I must release them all (to the distress of those around me) with an intense emotional breakdown sometimes involving my punching bag or cutting off contact with everyone. I delay my flipping out until it is safe to do so. This becomes a problem when the emergency doesn’t end and it’s never safe—such as my current situation of fighting for Social Security Disability, living in an unsafe unhealthy unstable environment with deteriorating financial and psychological stability. Without surcease and expression, my feelings become septic and add to my psychological instability and overall high arousal state.

In neverending crises like this, writing and music have become necessary ongoing practices for me. They are my pressure release valves, helping dumping some of my gunked-up psychological tanks—much like the weekly maintenance on the RV’s wastewater tanks to limit buildup from completely filling them and rendering them unusable. As well as breaking irreplaceably expensive parts the system and causing sewer drain fly infestations. I’ve become desensitized both to human waste and the ferocity of my emotional buildup, made more intense by the symptoms of my mental illnesses. This is why my computers and musical instruments are as vital to my survival as my car.

Practical Needs: Fortunate Misfortunes

Concerning basic survival supplies, I am fortunate that, because of the age of the plumbing in the RV, I don’t have potable water and continually stock up on water, since the first thing everyone does in a crisis is clean out all the stores of water. I’m fortunate that I stock up on canned goods regularly with my food stamps and have a rice cooker donated by a friend.

I’m fortunate that the RV is connected to a back-up generator. I’m fortunate that my disabilities don’t leave me vulnerable to death if, say, refrigeration or power fails or I can’t get to a hospital because of downed trees all along the eleven-mile two-lane overwhelmingly rural drive to civilization.

Some Psychological Skills I Use

I’m fortunate that I know I have survived many emergencies and disasters and have explored how I did so, and how others have. I’m fortunate I practice coping skills (particularly Dialectical Behavioral Therapy) on an ongoing basis. I’m fortunate that I know for certain what I need to live and continually shore up those things as a way of dealing with the continual existential anxiety of struggling to survive year after year.

I know I can’t control nor predict what will hit me day to day (including mercurial weather), nor my ongoing legal battle for Social Security Disability (beyond everything I’ve done to educate myself, comply with all Social Security’s demands promptly, lawyer up until I found the right one for my case and complied equally promptly with him, and solicit the assistance and support of those treating me). So I use mindfulness to turn thoughts of any dreadful fantasies of what could happen toward, “What can I actually, practically do to prepare against that nightmare eventuality?” I assess my resources and limitations, research and ask trusted professionals, and then make any positive change, no matter how small. I cope ahead daily. If the answer is that there is nothing I can do, I turn to skills to help regulate overwhelming emotions and my psychological pressure release valves. I read, write, or play music to combat feelings of powerlessness that might otherwise throw me into paralyzing psychological chaos.

The Habits of Enduring Survival

I live on the edge of a metaphorical black hole. This means a daily striving to push myself beyond the event horizon and not be sucked in and crushed to death by inaction. My inadequately treated disabilities worsen each year. Medicaid rejects my repeated applications on the grounds that Social Security has not deemed me ‘disabled’ even though I meet the financial threshold for Medicaid eligibility. (One of the worst injustices I face is that benefits meant to support and sustain the disabled are denied to anyone to whom Social Security is currently denying benefits—making other benefit programs even more essential to survival.) It’s possible I could die of poverty, physically unable to reach food and necessary care. It gets harder as money and health dwindle in the absence of income, a safe healthy place to live, benefits or safety nets that won’t abuse my vulnerability and reveal conditions and expectations beyond my ability and safety.

Yet I persist. I can still write and read and listen to or play music. I can remove my self from suffering and ‘renew my anonymity’ in my own ritualistic ways. Art is my spiritual practice. It has always been there for me in the most acute as well as lengthy crises. Art is my form of prayer and meditation. Sometimes I can forge meaning and build identity from the smallest inspirations anywhere.

Prolonged Trauma Permanently Crippled as Well as Taught Me

I forged value as well as crisis survival techniques through decades of exhausting, overwhelming, time-consuming work and basic skill-building. These burdens can seem bewildering and unnecessary to those raised in an environment absent of inescapable varied traumatic abuse, control, neglect, invalidation, misuse, and indoctrination.

Despite how it may seem I’ve ‘made lemonade from lemons,’ it’s crucial to remember that while one can build shelter from rocks that have been hurled at one for years, it does not make a prolonged campaign of rock-throwing legal or acceptable. Also, being hit repeatedly with rocks can cause permanent damage and constant pain that may never heal, even if external signs of injury fade to invisibility.

My disabilities and crisis-coping are invisible—but like gravity and air and time, their reality is constant and their impact profound.

In ‘Trauma and Recovery: The Aftermath of Violence—From Domestic Abuse to Political Terror,’ Judith Hermann writes:

“People in captivity become adept practitioners of the arts of altered consciousness. Through the practice of dissociation, voluntary thought suppression, minimization, and sometimes outright denial, they learn to alter an unbearable reality.”

“During prolonged confinement and isolation, some prisoners are able to develop trance capabilities ordinarily seen only in extremely hypnotizable people, including the ability to form positive and negative hallucinations and to dissociate parts of the personality. …Thinking of the future stirs up such intense yearning and hope that prisoners find it unbearable; they quickly learn that these emotions make them vulnerable to disappointment and that disappointment will make them desperate. They therefore consciously narrow their attention, focusing on extremely limited goals. The future is reduced to a matter of hours or days.”

“…recovery, like a marathon, is a test of endurance, requiring long preparation and repetitive practice.”

Even before the fourth edition of the Diagnostic Statistical Manual, Hermann advocated for and outlined the criteria of a new diagnosis labeled ‘Complex PTSD.’ Survivors of long-term captivity and abuse they were powerless to stop, particularly children raised in such environments and subsequently maladapting at crucial developmental stages, display persistent treatment-resistant symptoms far above and beyond those with a PTSD diagnosis whose traumas were more singular or short-term. Complex PTSD sufferers display observable profound personality alterations, disordered social functioning and/or avoidance of human contact, failures to adapt to ordinary stress or new situations, numerous physical and psychological dysfunctions such as overproduction of the stress hormone cortisol and malfunctions in the measurable sympathetic nervous system that controls the ‘fight or flight’ response.

Hermann’s proposal, though advocated for and and endorsed by many therapists struggling to treat such patients, failed to be included in the DSM-IV or the more recent DSM-V edition. Why is this important? The DSM is the ‘bible’ of standard criteria for diagnosing mental disorders. It’s relied upon by everyone from clinicians to health insurance and pharmaceutical companies and Social Security. This single book has profound medical, financial, and legal consequences for the enormous percentage of the population living along the spectrum of varying degrees of psychological distress and mental disorders. Adequate research, treatment, support, benefits and rights for the most severe and disabled suffering can fail in large part because of how much this book influences individuals and systems with power.

Though it’s not ‘canon’ as far as the DSM, health care industry, and justice system are concerned, people write about it, make videos about it, and even refer to it by name in conversation.

One of Judith Hermann’s final notes on the subject stayed with me the most, and came to mind often as I read Michael Scott Moore’s book about his years of captivity. Hermann wrote that naming the syndrome of Complex PTSD

“…is an attempt to learn from survivors, who understand, more profoundly than any investigator, the effects of captivity.”

More health struggles & things I’m selling to survive

Thanks enormously to my friend for helping me buy the chemicals I need to try to eliminate the drain fly infestation in my RV. I have a clinic appointment on Thursday to try again to cure this persistent upper respiratory illness.
 
My friend Amanda has posted the following vintage Coach leather goods I’m selling on eBay:
 
Please pass on these auctions to anyone you know who might be interested. I’m still laboring to complete listings for the rest of the vintage Coach leather goods I have, including some purses and a large weekender travel duffel. I’ll post them as they’re listed.
 
Everything I sell helps me continue surviving during my ongoing fight for Social Security Disability benefits.

I’ve been battling for Social Security Disability Income for over 4 years now. I’ve had to sell my house and everything I can live without to pay my bills—mainly for my car, without which I can’t get food or treatment. I’m asking for any help you can give. Please note that legally if I use some kind of fundraiser (or sell anything for more than I paid), that counts as income/support from other people, which could take away my food stamps and torpedo my SSDI claim. It’s also not sustainable for the rest of my life. My disabilities and struggles to survive preclude me from the work of continually applying for grants (which might also jeopardize my food & disability claim). This is the best I can do, and only with enormous help and support from my friend Amanda.

Below I’ve linked collectibles I’m selling. I priced them based on successful eBay sales of the same things. These could make excellent gifts if you know anyone who’d love them (maybe even you!). If you’d be so kind, please pass these listings along to anyone you know who might like them. (I’m planning on listing things on my local FB marketplace if they don’t sell.) Shipping can be combined.

Tiffany & Co porcelain 2″ Signature Tiffany ‘Blue Box’ trinket box: https://www.ebay.com/itm/273440669704

Three beautiful (and functional) velvet masks ​by Judith Rauchfuss, in blue: https://www.ebay.com/itm/273440706268

…red: https://www.ebay.com/itm/273440716741

…and green: https://www.ebay.com/itm/273440718794

Beautify large black leather jewelry travel case with lock & mirror: https://www.ebay.com/itm/273207718507

2002 Audrey Hepburn mint pane of 20 US 37¢ stamps, + Audrey Hepburn photo print: https://www.ebay.com/itm/273439248364

2002 Cary Grant mint pane of 20 US 37¢ stamps: https://www.ebay.com/itm/273439249640

5 beautiful blank book journals, cover art by Kinuko Y. Craft, M.C. Escher, Edward Robert Hughes, + more: https://www.ebay.com/itm/273439148469

3 blank black paper notepads with blue and purple velvet covers: https://www.ebay.com/itm/273439246202

4 blank book journals, themed with Alice in Wonderland and Winnie the Pooh: https://www.ebay.com/itm/273439211174

Ral Partha Richard Kerr Rawcliffe pewter dragon statue ‘Check Mate’: https://www.ebay.com/itm/273180087919

3 pewter unicorn figurines: https://www.ebay.com/itm/273440679072

6 figurines (dragons, wizards, swords), pewter + more: https://www.ebay.com/itm/273440724131

Small lot of science fiction TV memorabilia (Doctor Who, Mystery Science Theater 3000, seaQuest): https://www.ebay.com/itm/273440684797

Final Fantasy X Rikku wall scroll (31″ wide): https://www.ebay.com/itm/273207707766

Final Fantasy VII Advent Children ‘Cloudy Wolf’ ring with original box: https://www.ebay.com/itm/273207710644

Final Fantasy VII Advent Children 13″ x 13″ square throw pillow: https://www.ebay.com/itm/273439251386

6 Fraggle Rock 1988 McDonald’s Happy Meal Toys + Fraggle Rock UNO: https://www.ebay.com/itm/273440676959

1981 Kermit the Frog plush doll & two 1983 Fraggle Rock plush dolls: https://www.ebay.com/itm/273440703050

7 Fraggle Rock 11″ stuffed plush dolls (2003): https://www.ebay.com/itm/273440690827

1970s 14″ Eden Peter Rabbit plush stuffed animal: https://www.ebay.com/itm/273440700387

Lot of Sanrio ‘Little Twin Stars’ stationery, memorabilia, soft blanket: https://www.ebay.com/itm/273439253833

Lot of Sanrio stationery and office supplies (Hello Kitty + My Melody + more): https://www.ebay.com/itm/273439263820

‘House Mouse’ blank mint condition 25 gift cards + 14 envelopes by Ellen Jareckie: https://www.ebay.com/itm/273439266622

5 Monster & Radio Shack cables, RCA stereo sets + S-Video: https://www.ebay.com/itm/273440682072

I’m still working on auctions for some authenticated Coach leather bags and accessories, as well as some semiprecious & precious gems. I’ll post those auctions when they’re up.

If you’d like to support me in other ways, I have a wishlist for daily necessities that I run out of: http://a.co/jf1cKc6 . Amazon gift cards are also always MUCH appreciated. I want to especially thank with all my heart the friends who have helped me out here. I didn’t know if it was okay to thank you by name, but you know who you are. You are literal lifesavers! ❤

SSDI, food stamps, & medication

My Social Security Disability lawyer Michael Bertics met with me about my case. He’s confident we will have a new SSDI hearing before the end of the year, following his win with the district court judge. It’s unknown whether it will be with the same judge who screwed up the first time, Joseph Brinkley.

I’ve gotten my food stamps. It was a battle to get this done, and they were prorated to only half my benefits because I ‘didn’t get the information in on time.’ I decided it wasn’t worth the battle to argue that yes, I absolutely did, but as happened many times before, what I sent in was somehow lost. I was given food and a rice cooker to help me last, for which I’m profoundly grateful.

The local food bank is bullshit. My experiences with it have shown me all I can get from there is rotting food, food I explicitly stated I was allergic to, food I can’t cook, and food I can’t eat because I don’t have other needed ingredients to make it. And that only after I have gotten a written referral from my therapist, driven the hour to get there, and waited an hour for a pathetic offering I can only get once per month. It’s a great concept, but my local food bank doesn’t actually feed me. I’m glad I qualify for food stamps so I have been able to eat and survive these past several years. It’s the only option and quite often it sucks but at least I can eat.

I’ve had mental health issues my entire life. I was abused from birth in myriad ways that crippled my development and showed up as myriad symptoms that confounded everyone, especially myself. I’ve seen an endless stream of different kinds of therapists from my tween years on. I’ve been put on all the medications, even some not prescribed for nightmares, sleep disturbances, persistent (and arguably valid) depression and trauma stemming from an inescapable and twisted life. Nothing worked, in part because it didn’t fix my living situation or make survival sustainable.

Each year as my situation has deteriorated and demanded more of me. My symptoms have worsened and paralyzed my capacity to take care of myself. Within this last year I grew so desperate I sought radical solutions. I felt sluggish and fogged by stress and constant flashbacks and physical pain. The medications prescribed for my conditions only served to compound the fog and inability to focus or do anything. Tranquilizers, sleep and pain medications slowed me more and more until I couldn’t shower, feed myself, get out of bed. SSRIs make me suicidal. SNRIs do nothing for me. Tricyclics either do nothing or put me in the hospital from adverse reactions. I’ve become increasingly unable to be around other people, partly due to my situation and partly from past trauma and social maladjustment during development from living with ongoing abuse.

I found some literature and articles that showed that in some cases, Adderall could potentially alleviate the most crippling of my symptoms, enough to enable me to function and have energy and focus to fight for survival. I took the information in to the nurse practitioner handling my medication, who I was able to see along with my therapist since North Carolina has a free mental health care program I qualified for. My NP was familiar with everything I brought in, so it was thankfully easy to make my case with her. For the first time I had medication that actually helped me.

At the end of May the entire medication management team left my place of treatment. Since then they have been unable to hire new NPs. I’m told that part of the reason for this is that last year there were no NP graduates qualified to administer mental health prescriptions from the sole local program. Their solution has been to use video conferencing to have patients be seen by NPs in western NC.

Everyone receiving treatment there has suffered as a result. We’re no longer seeing the same NP from visit to visit. Many of us with prescriptions for controlled substances have had trouble physically getting the prescriptions to our pharmacies to be filled before we run out. Some with us severe mental illnesses have had significant gaps and problems with medication and were unable to be seen for emergencies related to medication. The appointments, which used to be 15 minutes, now last up to an hour. Every new NP is having to get to know every patient every time. There aren’t any appointment times open until October even for those who have to get new prescriptions written each month. Many of us wait an hour to be seen at all. Everything takes more time and effort for us clients that we may not have.

Even though I have been prescribed Adderall by multiple NPs and taken it for eight months, every time since the beginning of June I was having to argue my case again and NPs have ranged from skeptical to the latest, unwilling to write a prescription out of a professed fear of being audited and having the prescription called into question since I don’t currently have an ADHD diagnosis. I have been given one final month of medication and in that time I’m going to have to submit to a psychological evaluation no one is qualified to give where I’m getting treatment, necessitating a referral and appointment. I don’t know how long that will take or if it will come at a cost I can’t afford, or even if it will result in a diagnosis that enables me to easily get the only medication that has ever helped me in 25 years. Additionally it demands even more from me that I don’t always have, because I’m struggling with so much else to get my basic needs met and survive day-to-day.

It’s terrifying to think of being crippled even further by no longer having any medication that works to help me meet these challenges. I can’t function anymore without the medication, and even with it I’m worse off symptomatically than I was this time last year.

What’s especially traumatizing about this is my powerlessness to do anything about it. Very few places in this area see people in the state-funded mental health program, and the others are all much worse. I’m exploring every option I have from under a cloud of terror and helplessness.

I’m talking with people in the system who are familiar with everything. Though you may be tempted to offer advice, I’d appreciate it if you didn’t unless you have extensive knowledge about this area and actually know of a way for me to get this medication consistently without sacrificing more than I have to give. Especially my dwindling money and energy.

At the very least I can write about this situation, not to ask for help, but to raise awareness about what’s going on. That’s really all I’m doing here. That and venting about this bullshit. One of the things in my life that has consistently made everything worse is not talking about it, or allowing the fear of aggressive bad-advice-giving from people ill-informed about the actual realities of my situation to shut me up.

I appreciate that in people’s frustration and desire to help, they rush to ‘fix’ it by telling me what to do and put me in the position of having to manage my anger and despair and educate people as to why their advice is impractical. Which is absolutely exhausting and why I often don’t even talk about what’s happening. I can’t shoulder both the burdens of (1) these crises and (2) taking time and energy to try to politely explain myself to others who may be offended that I’m not taking their advice.

Advice itself is often triggering to me because I’m really sick of being told what to do instead of having someone help me do something productive. Even words attempting to cheer me up anger me because I don’t like being told what to feel, or to not be upset and use that anger to do something to try to fix things. All my life, my anger has been stigmatized, my complaints trivialized, and I’ve been treated as if I don’t know my own reality best. Or that I just haven’t thought of or tried every workable alternative. Like I’m not already redlining past my limits every day doing everything I can.

I know I’m not alone in this. A lot of us struggling to survive are exhausted by it, disillusioned, angry that systems near-universally believed to be solutions don’t actually work (or consistently work) for those of us depending on them. I think it invisiblizes the poor and disabled even more when we don’t have the time and energy to talk about these things and deal with both the violent hateful backlash and well-intentioned but uninformed allies and loved ones we cherish and want in our lives.

Obviously I have a lot of pent-up feelings and words about this.  I want you to know I appreciate you taking the time to read this. I know it can be uncomfortable to read about and frustrating to feel powerless to help. I know it can be frustrating if well-intentioned advice is offered but not apparently taken or responded to, because I don’t have the spoons to take care of the feelings of people I love who want to help. Please understand: I feel even more uncomfortable, frustrated, and powerless to live this way.

This is the best I can do.

Updates on my fight for survival

I came home from ROOTS Week 2018 to a lot of unpleasantness. I’d been having some struggle getting my food stamps recertified before I left. The information I sent in got ‘lost in the mail’ so I haven’t gotten my food stamps benefits for this month. No food. This happens a lot. I’m glad I scan stuff before I mail it, so I could call, get an email address, and send in my scanned copy. Unfortunately I usually have to call my caseworker several times a day for a week to reach her and get things moving.
 
I also got a denial for the SSI (Supplemental Security Income) benefits I applied for since I’m now so low on the money I’m living off of I qualify. I was denied largely on the decision of the biased judge who ruled on my SSDI (Social Security Disability Income) hearing two years ago after ROOTS Week that sent me into a deep dark hole. I was denied my recent Medicaid application as well based on the denial of SSI which was based on that judge’s asshaberdashery. I really hate Joseph Brinkley, especially that his one-time decision continues to hold ultimate power over what I need to survive. But read on, there’s news about that…
 
I have to use that Medicaid denial letter to try to get back into a program that will pay for my monthly meds and will probably need lots of phone calls or even a fresh reapplication for medication assistance. This is doubly hard since the entire med management staff at the place where I get treatment left at the end of June and their stopgap measures are contracting outside providers to meet with clients via FaceTime, all of whom are bewildered by the complexities of my situation, and the fact that the only medication that works for me isn’t typically prescribed for what I have.
 
I emailed my disability lawyer begging him to help me write the SSI appeal. He called me immediately. Yes, they will write my appeal. He also told me that he argued my case before a federal judge and won: the judge ruled that the Administrative Law Judge (ALJ) at my SSDI hearing two years ago fucked up royally. (Yay validation!)
What this means is that the case will be sent back down for another hearing with specific guidelines mandated by the federal judge over what the hearing ALJ is not allowed to do. We’ll apply for Dire Need to try to get my case fast-tracked to a hearing date. If the ALJ who hears the case makes those mistakes again to deny my claim, the federal judge will overrule and award me benefits.
 
My fears are: (1) all this will take more time than I have left to survive on the money I have, (2) I will be denied using different grounds and have to go again to a federal judge, or (3) the case will fail entirely and we’ll have to start over with a new claim. It took more than six months to get through the first two appeals after my initial application, a year and a half to get the hearing date, and then two more years to get the federal court date. I’ll know more after I meet with my lawyer next Wednesday.
 
In the meantime all my stress is focused on relentlessly calling to get my day-to-day needs of food and medication met. I’m so grateful to my disability lawyer Michael Bertics to know what to do and handle the bigger picture stuff while I flip out and obsess over and fight for food and meds.
 
To me the timing of all this highlights a keen ongoing need to address classism and economic justice with Alternate ROOTS. I will contribute when and as I’m able with the document Wendy Shenefelt created for us during the spontaneous conversation we had at Mission after the closing UpROOTing Oppression session. The crappy thing about being poor and disabled is that survival sucks up all the time and energy I need to even talk about what’s happening.
 
Thank you to everyone at ROOTS Week for creating and holding space for that conversation to start. I was able to use the energy I reserve every year for the meeting to actually speak from a place of feeling safe and held and having my basic needs met.

#PunkCuts Fundraiser

Dephinia-red

Hi all! I’m doing a special challenge fundraiser for NC’s Orange County Rape Crisis Center. This amazing place does so much year round, both in community education/awareness-raising and support for survivors and friends & family. Their programs got me started on my arts-activism journey. Now I get to give back with my art.

Won’t you please donate and help me reach my goal? I’m a tenth of the way there!

Donate to my fundraiser page no later than August 17th and if I reach my goal of $100, I’ll cover Patti Smith’s ‘Dancing Barefoot’ on banjolele while hula hooping AT THE SAME TIME! This ludicrous video will be shown at the #PunkCuts event in Carrboro on August 17th & also on my YouTube channel for awesome out-of-town donors!

(Also check out my awesome punk cut & dye job!)

Website still broken, but URL fixed!

Thank you with all my heart to everyone who sent me Amazon.com gift cards and items on my wishlist, to help me cover household expenses and necessities like toilet paper and RV repair parts, things that aren’t covered by my food stamps benefits and continue to be expenses. I still have no income and fight and wait year after year for Social Security Disability Income. I’m waiting on district court proceedings with my disability lawyer, and no idea when I will hear anything.

I moved my domain name kassidephinia.com over to GoDaddy, who are more than happy to set up forwarding to this free WordPress blog, so my URL works again!

Unfortunately as soon as I fix one thing, five more fall apart. I’ve been consumed by trying to learn to repair my laptop, phone, and RV—as well as dealing with hiccups in getting my medication and an issue with my food stamps. With these ongoing costs and in spite of auctioning off everything I can live without, I’m still struggling financially. Amazon.com gift cards in any denomination, or any items on my wishlist, are still enormously helpful and appreciated.

New, broken website

I can’t afford web hosting any longer but my URL is paid up through next year, so I’ve migrated to WordPress.com free hosting.

This means a lot of older posts on this blog that featured embedded videos are broken. Fixing those and trying to make this site more functional cannot be priorities right now. I have a limited amount of time, energy, and resources. I’ve saved a backup of the old site in the unlikely event I’ll ever be able to pay for hosting again. In the meantime this blog and some of my other pages sort of work.

I want to thank from the bottom of my heart all those who gifted me Amazon.com gift cards enabling me to buy necessities like soap and such that aren’t covered by my foodstamps. I also deeply appreciate my friend Amanda’s continued assistance in selling on eBay all the things I can live without. It’s not much but every little bit helps.

Right now with my dire financial situation my priorities are applying for Medicaid and also Supplemental Security Income, which while different from Social Security Disability Income, necessitates some similar processes and doesn’t have a lot of reliable guidance out there for how that will go for me. Many people apply for both at the same time and sometimes SSI can get granted while waiting the interminable process of getting SSDI, which for me has now been four years with no federal district court date in sight. I have a disability lawyer to assist me in the process.

These are not guarantees that I will ever get approved for any of these programs in spite of how severe my disabilities have become, exacerbated by the stress of living homeless and running out of money no matter what I do. I live way out in the country and must have a car to get groceries, treatment through North Carolina’s free mental health care program IPRS, and get medication. That car is far and away my biggest expense: insurance, maintenance, taxes, registration, and gas. The only programs out there to help with transportation are extremely short-term or apply only to those already approved for disability. Most every kind of benefits there are hinge on me being approved for SSDI even though the dire nature of my need for these benefits is because I don’t have that.

There is nothing I can do to speed up the SSDI process. Believe me, I have done a lot of research and asked my lawyer and tried all I can. There are plenty of articles and firsthand accounts of others in my same situation who are going through the same problems. When I run out of money I can’t even file bankruptcy because I have no income nor any guarantee of ever getting any from Social Security.

I’m burned out. It takes more than everything I have just to stay afloat, research options, try things, and sell everything I can. It’s stressful, triggering, heartbreaking, depressing, and the futility exacerbates my conditions. The way this culture, this country, this government, and individuals treat the disabled is passively criminal. No one in a position to do something cares if we die. There’s a lot I can’t do to fight this because I am disabled and my limitations are greater than the abled, something that the abled often find impossible to comprehend when they offer advice based not on my capacities and abilities but on their own.

If you think I’m not fighting as hard as I can, already redlining my capacities to do all I can, you’re sorely mistaken. I don’t need advice. I’m already talking to people who work with the disabled and understand the harsh realities of this situation. I need disability income. Sadly it seems that other than those helpful gift cards there’s nothing anyone else can do.

If there is one basic thing you can do, it’s to refrain from giving advice. Advice puts the burden on me of explaining to you what I know all too well about my reality or else doing more, which as I already stated I can’t. It isn’t that I don’t want to help myself. I am doing that every day.

What I can’t do is deal with people who don’t know what they’re talking about and think that advice rather than offering help is generosity. Unsolicited advice is criticism. I get more than enough of that as it is. It frustrates and irritates me that advice-giving is such a compulsion for many people, particularly those who don’t have any shared reality with me, who have privileges and abilities I don’t. Why are we raised to think advice is just as if not more appropriate ‘support’ than asking what one can do, or actually committing some of those privileges and abilities to doing something about it?

No matter how much I read, write, and talk about this, advice-giving is an unconscious response to others’ trials, especially when the advice-giver has no personal experience or expertise in that area? If I could wish for one superpower, it would be to overwrite that hard-wired instinct to give advice the first time someone in a dire traumatic situation opens up to you.

It’s inflammatory and exhausting to have dealt my whole life with people who don’t know what to say and say it anyway, or ask inappropriately personal questions about the history and background and details of things like my disabilities, how I got here, and my widowhood. These are sensitive, vulnerable topics. If I wanted to tell you the whole story I would. After advice-giving I’d love to shut down the compulsion that drives people to interrogate someone in pain about that pain, asking such personal questions they would never ask a random stranger. That I have shown you my wounds demonstrates vulnerability, it doesn’t invite reflexive curious prodding of the hurt places. I may share some details, it doesn’t mean I will tolerate pressure for more.

Listening is justice. Listening is loving. Asking what you can do to help and then following through is true support. Recognizing the limitations of your experience and knowledge is crucial to being there for someone who is suffering in ways you aren’t.

I’m fortunate and grateful for those in my life who are wired differently, who default to listening, to asking what they can do with a genuine unselfish capacity to follow through, even to action, based on their own capacities to be there.

I wish there was more anyone could do. Going this alone is hard, but not as hard as going through this with people wanting me to educate them or do things I don’t have the abilities to do or that aren’t possible or advisable—or even dangerous.

This is a dangerous time for me and has been for a long time with no end in sight. Every year, every month, sometimes every day I have less to give as I fight harder just to survive.

Maybe what I really wish is that those in a position to make my survival possible could feel exactly what this feels like, hour after hour, year after year, in the face of all this. I’m worn out. I have no more to give than I already am.

From what I’ve heard from others in similar situations, they are equally isolated, unheard, and gunshy of showing their struggles and pain to others for exactly the same reasons. It makes us targets for well-meaning behavior but also for people who feel better or more powerful or valid by attacking those who don’t have the ability or capacity to fight back. We’re out there. Our voices aren’t heard because it’s too dangerous for us and too unpleasant for others. Some of us are dying, not because our conditions are fatal, but because people who can and should do something won’t. We’re faceless and devalued invalids.

Never forget that this could be you. Disability doesn’t discriminate based on age, health, class, gender, race, creed, nationality, willpower, skills, or however many friends we think we have to support us in desperate times. I was told after my husband died that grief rewrites your address book. I think this is true of all hardship. Friendship and support are easy in the good times.

Believe me when I say what I can do varies dramatically day to day due to my symptoms. It has been hard enough for me to come to grips with the limitations my disabilities place on me, and still I drive myself past what I can or should do and I pay the price. It’s hard enough dealing with the implicit shame and sense of personal failure and unworthiness our culture drills into us from day one, that our worth is what money we can earn.

Believe me when I say I am doing the best I can to survive. I want a life worth living, and what I need to make that happen is out of my hands.

If you want to help in more tangible ways, Amazon.com gift cards are still always welcome and enormously appreciated. My needs for things like soap, paper towels, toilet paper, and other personal hygiene items will continue indefinitely even while I still have no benefits available to help me get those vital things of living.

People are dying waiting for disability, and I may be one

Since I started posting and making videos (which I’m now too symptomatic to do) about struggling with disability and my long fight for Social Security Disability Income (SSDI), one of the most heartbreaking things has been all the responses of people just like me, out there, isolated, alone, suffering, running out of hope. The worst part of it is, as my situation continues to deteriorate year after year through this struggle, I’m so decompensated I can no longer bring myself to respond or even post at all. My symptoms and poverty overwhelm my life to the point where I can barely take care of myself. I no longer feel I have a shared reality with anyone I know, and without that shared reality there can’t be meaningful connection.

Here’s an article from the Washington Post discussing the 10,000 people who died in 2016 stuck in this same backlog of disability cases.

Here’s another article from the Washington Post written by someone who lost everything waiting for disability.

This second article details what I’m going through right now. It’s been almost four years since I first applied for disability. I haven’t worked. I have sold my house, furniture, appliances, and almost all my personal possessions of any value I can survive without. Soon this website will go away; it’s up for renewal and I obviously can’t afford it any longer.

It’s terrifying and exhausting to be at the end of my savings, the end of everything of value, and still have no idea when I will get my day in district court or what will come of it. I have the best possible SSDI lawyer for my case—lawyers that work for a portion of the back benefits, so if I don’t get paid he doesn’t—and he tells me we have drawn the best possible judge to hear my case, but there is no way to know when the court date will be set. In the meantime I have to scramble to sell anything that I can of any value in order to pay for my car insurance and upkeep and gas. Because I live seven miles from the nearest grocery store, and much further from where I get mental health treatment and medication, the loss of that car would mean slow excruciating death.

One of the worst parts of this is not being able to talk to anyone I know. We don’t have anything like a shared reality and all too often people are in a hurry to give advice about a situation they don’t live with and know nothing about, which has gone from annoying to infuriating and insulting and frustrating. Over all these years, I haven’t been sitting around doing nothing. I have been working with therapists and social workers and institutions to apply for every conceivable benefit to help me get by. I get food stamps, but don’t qualify for Medicaid, SSI, or housing because the money I have—all that exists for me to live on for the rest of my life—exceeds (but only just!) the limit for cash on hand for those services. By the time I am below that limit and apply again, those applications will also take months or several years, during which time I will definitely run out of money. Meanwhile I’ve been waiting for four miserable years trying to spend as little as possible, doing without things when they break, fearing something really expensively disastrous will happen to wipe me out.

It feels like getting saddled with a heavy rock, and then another, and another, and another, continually for ages. I’m increasingly crushed and breathless under the burden, scrambling to find any kind of way of surviving. Food stamps don’t cover personal hygiene items and the local food bank doesn’t either. I’ve been looking unsuccessfully into other organizations to try to find those things, but even that isn’t going to do much to save me. There are a few places that I’m looking into to apply for gas vouchers. Yet still, it’s car insurance and upkeep, taxes and registration that are the huge expense, and though I’ve done everything I can there, there’s not much that can be done and still keep that car safe and functional.

One thing I hate most about talking about this with other people is their suggestions for jobs. As if I just haven’t thought of the right thing. It’s invalidating to me that I can’t get across that it isn’t that I need a particular special job: I am too disabled to sustain gainful employment. I may from time to time be able to accomplish some things, but that’s hardly the same as doing that consistently 40 hours a week 52 weeks a year. Someone in a wheelchair may me able to get up enough to transfer from the wheelchair to a car or toilet seat with great effort, but that doesn’t mean they’re able to walk everywhere. That’s bullshit.

I’m tired of suggestions of work when the basic problem is that I can’t work and I’m tired of explaining it. If I could work, I would. No one would endure this terrifying, humiliating, drawn-out, draining, psychologically and fiscally bankrupting process of fighting for SSDI for four years if they could work. Even if I succeed in getting these benefits, I will still be living in poverty and have to get subsidized housing and Medicaid—but I will be living.

The real trick is surviving until I get there.

Do you really want to help? I understand that advice-giving usually is triggered by discomfort on the part of the person listening to a predicament, but I can offer much smarter ways to help me.

  1. Listen and validate. I’ve heard ‘listening is loving’ and also ‘listening is justice.’ In this case, it’s kindness and love for you to be just reading these words and validating that this struggle is real.
  2. Please don’t ask invasive questions about my disabilities and how their symptoms impact me and my daily life and my ability to work, nor invasive questions about my living situation or how it got this way. I already have to sacrifice my psychological, bodily, financial, and every other kind of privacy every single time I apply for benefits. Privacy is a privilege one doesn’t realize one has until falling down as far as I have, where I now have to provide excessive personal documentation as proof in order to try to get my basic needs met. I would like at least some people and places in my life to respect my privacy and not make me feel like I must prove who and what I am. It’s humiliating, and in a way I think most people don’t consider when dealing with someone who is poor and disabled, to ask what may feel like harmless questions to the questioner but are loaded and extremely overdone to the questioned. The fact that I share a lot of my struggle isn’t an invitation for you to use me as a teaching tool or to enlighten you about my entire experience. I’m exhausted just trying to survive. There are plenty of websites and articles and videos out there for you to educate yourself, done by brave people who share my plight.
  3. Have patience with my struggle. Understand that almost all of my time now is split between managing overwhelming symptoms that are exacerbated to an unconscionable degree by my living situation and money terror. My first priority is to take care of myself. I now find it almost unbearably draining, not to mention risky, to respond even to most of my friends. I’m engaged in a humiliating, painfully vulnerable fight for my life that has worsened over the years, and I’m keenly aware that I don’t have the resources to maintain friendships or reciprocate when I can’t even meet my own basic needs. I also can’t protect myself, and as an introvert talking to other people is draining energy I need to survive and deal with painful disabilities.
  4. I have a wishlist on Amazon made up of household essentials I’m in dire need of that food stamps don’t cover, mainly personal hygiene and cleaning items, but also Amazon gift cards I can save and use to buy these and other daily necessities.
  5. If you do choose to avail yourself of this and gift me the things I need, thank you. Please, I beg you, take care to have self-awareness! Take a deep look at yourself before you do. I have good reasons for not asking for help or favors; I have had traumatically abusive experiences the majority of the time people have offered me help. The friendship changes. The worst changes come from those who insist that they won’t, and deny that they’re scrutinizing my behavior and spending habits and life more so afterward—people without the self-awareness to admit that their charity was conditional. I’m not talking about an expectation of reciprocation, but after accepting charity I often find myself in a position where the giver becomes intolerant of my setting boundaries with them or telling them ‘no’ and it snowballs downhill until I have to go no contact. I have neither the energy nor the patience for any assistance that comes with strings of any kind. I understand that for the vast majority of these bad experiences I had, it was done unconsciously out of discomfort for my suffering and need, but that only makes it worse. Anything someone is doing or saying or expecting that one is in denial about can’t possibly ever change. No matter how good the intentions, charity can become toxic, a form of abuse and control, even without the knowledge of the charitable. Us recipients sure know what that feels like, though.
  6. Consider buying or making an offer on the last few things I’m selling. Currently I have listed an excellent condition Ensoniq TS-12 synthesizer with stand on Reverb.com and an enormous statue of Figment the dragon from Disney’s Epcot Center on eBay. (Enormous thanks to my dear friend Amanda for helping me deal with eBay as it’s more than I can handle right now.) I’m down to the most difficult and unwieldy things to sell, hence the hugeness of the pieces and large shipping fees; I’ve failed to find local homes for these. If you know anyone who might be interested please do pass along the links! In the coming weeks I’ll be listing a few lots of semiprecious gems and pewter figurines, and I will share links to those as well if I’m having difficulty selling.
  7. Spread the word about the thousands of disabled people in the US suffering, going broke and homeless, unable to afford proper care, and even dying through years of waiting for disability. Start conversations. I’m too long-winded and tired for the age of tweets and hashtags. Find better ways to write and talk about what you’ve learned here and make some noise. Most of us are too tired, frightened, humiliated, and disempowered in every way to fight when it’s a fight every day just to survive and live with inadequately treated disabilities exacerbated by our living conditions and lack of resources to meet our basic needs. (If you’re really ambitious and so inclined you can write to your political representatives, or news outlets, or hell, ask Last Week Tonight with John Oliver to do a deep dive on Social Security Disability corruption like they did with immigration courts recently.) Use the privilege of the energy and time I don’t have anymore to advocate for those of us who can’t. Enlighten one other person about this fucked-up system. To me the most important thing about this is the fact that anyone, regardless of class, race, creed, family, nationality, age, gender, sexuality, physical fitness, and fastidiousness with personal health and safety, can at any time without warning become to disabled to work. We come from all walks of life. What is happening to me could happen to anyone, anywhere, no matter how safe you think you are, or your loved ones. Disability is not our fault. Do we become untermenschen because we cannot work? How fragile, then, is your worth to this society and your fellow humans? Are you only worth what someone will pay for you? Food for thought.

Thank you for reading. I’ll eventually set up something like a free Blogspot (assuming I’m still alive) if I can muster more words to say in the future. This site will still be here a while and I will retain a backup of it in case there will ever be a better life for me in the future.

I won’t hold my breath.