My hearing date to determine whether I qualify for Social Security Disability Income has finally been set for August 23rd 2016.
I have an advocate. I found her through a post on her website about the challenges of trying to get disability while struggling with psychological disabilities. Many disability lawyers and advocates don’t get paid unless they win the case; they work for a percentage of the back benefits paid, and it’s capped at a certain percent.
During this waiting period of years I found NOLO’s ‘Disability Secrets’ website to be a clearinghouse of free information on SSDI, every aspect of the process, and some great advice that helped me work to make my case stronger. Especially physical and mental Residual Functional Capacity (RFC) forms and information on Unsuccessful Work Attempts (UWAs).
The forum of another website has featured threads of people sharing their firsthand experiences of their hearings, what to expect. I’ve also had a former Community Support Team member of mine who’s been through this with my specific advocate who has promised to be there by my side, and she and my advocate can walk me through the process closer to the date. I hope. If things go well.
It’s hard to know what was harder on me psychologically, the waiting but not knowing when there would even be a hearing while my money flowed away and I sold off all I could, or knowing now that these years of applications and denials and appeals are coming to a face-to-face head, when I know how very bad I am at face to face. Especially when my survival hangs in the balance.
The two great conundrums of my life have been finding a way for me to survive in a world where I'm not capable of making money to support myself, and how to deal when people hurt me. Every year I have less money, less power, less hope, more unresolved hurt.
I have four worries. One is that if I do get disability income, it won’t be enough to support myself, get out of here, and get the companion animal I know I need for my disabilities. The second is that if I do get out of here and get stable, I won’t ever really recover from this experience, because it’s gone on for so long and has been so traumatizing. (More on that in the next section.)
Three: I’m terrified of the hearing. I’ve already seen signs of my psychological state deteriorating now that the date is set. I’m terrified of having a total snap and because of the crushing awareness that my whole existence and survival hangs in the balance and I have literally nowhere else to turn if this does not work out. I’ve asked my therapist to be on hand to make sure I don’t get involuntarily committed to psych ward or mental hospital, which is my absolute worst fear, my hell on earth. It would be like a claustrophobe being shut in a box and told to stay there until they calm down. My phobia about being trapped my people, bodily restrained, and drugged, calls back to a lifetime of personal experiences. But that’s another story and shall be told at another time.
Which brings me to my final worry: that I won’t get disability. That I will run out of money and there will be no gas (let alone insurance, registration, property tax) for my car. And I will be truly stuck out here, unable to get food, get treatment and medicine, go anywhere. Nothing left. No way out.
My life is in the hands of a judge I’ve never met and whatever vocational expert will be there, and my advocate whom I’ve met once. My life hangs on a hearing that will be about ten to twenty minutes long. My life depends on medical and psych records that are sketchy at best, and answers and testimony I may be too freaked out to coherently give. My life, my future, any hope for survival.
Living for Years in Fear for Survival
One day out driving I came across a set of train tracks where the signal arms were broken in the down position and just stayed there, twenty minutes, half an hour, an hour. Clang clang clang went the signals. I saw people driving around the long striped barriers.
I turned around and went an alternate way.
With those barriers down and the signal going there was no way to know if there was an express train coming. It’s like if a fire alarm won’t stop going off, and taking the batteries out—how are you going to know if there’s a fire?
Living homeless is traumatic. Squatting in an RV where I could be evicted at any point for any reason, survival fear never goes away. The fear signals in my brain go and go and go because this isn’t safe and secure. Someone asked me if I felt safe and I laughed in their face. I haven’t felt safe in over ten years.
I take anxiety meds but they stop working eventually and I have to switcheroo and try to fool my brain some other way. The problem isn’t my perception of fear, my problem is living in a scary situation I can’t do anything about.
Karen Thompson Walker did an awesome TED talk about what fear can teach us, if we can listen to what fear is telling us. Fear isn’t the enemy. Fear is a signal that something wants/needs my attention. But what I’m afraid of here is much bigger than me. It’s systemic. It’s gone on for years.
The things that happen to a brain and a body that’s living in trauma and survival fear for years aren’t great. There’s a lot of great books about the effect of trauma on developing minds and long-term traumatic situations. Neuroplasticity is an amazing thing, yes—but I think of stories of people who lived through the Great Depression in the 1930s and through embattled countries in World War Two and economic depression in China, who were changed forever. Some hoarded soap slivers and newspapers. Some saw hunger as something to be overcome. Many were never really healthy or felt really secure later.
I don’t know what will happen… and neither does anyone else
I don’t want pity. I don’t want hollow words of comfort. This is why I don’t tell people the truth, why so many face-to-face relationships are kicking the bucket or die a-borning since I’ve become disabled and poor. So many things people who are more economically privileged than me and safe than me say things to me that I’m not okay with. Easy for them to say—it’s not their survival hanging in the balance. And they don’t know, really know, what will happen.
I’ve honestly had it with non-stakeholders and people who don’t pay the price weighing in on issues that threaten my life and safety, particularly in condescending ways. No comforting, please, and really especially no invalidation. I think most people who’ve made it this far, reading, understand at least some of where I’m coming from, hearing my words, and are bearing witness.
I’ve longed my whole life for witnesses to say, “Yeah, this fucking sucks. I won’t pretend to know what it’s like for you and I won’t compare my financial woes to yours. I see you. I hear you. I’m here with you.” That’s all. No big dramatic rescues, no music swelling and heavens opening up. Just, “Wow, shit. Well, I’m right here beside you, whatever you gotta do. I may not be able to help but I won’t try to direct your choices. You do you.” Or something along those lines. I think you can hear the tune I’m singing here and make up your own words, if your heart knows how to sing this kind of song when the people you care about are hurting.
Every once in a while, I get lucky, and it makes it a little easier to breathe through one more day of this.