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.