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! ❤

Advertisements

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.