Boy, was I ever happy when I was released from my month-long stay in the hospital after my stroke last November.
I had really had it with being confined to a bed and people making my decisions and telling me what to do and when.
It really didn’t take long, though, for me to kind of miss other people being in charge of what happened to me (waking me up at 6 am to take blood samples, though–I’ve never missed that part).
It didn’t take long being outside of the hospital to wish I had someone doing everything for me again. From getting signed up for state benefits while I recover to finding a permanent place to live in a state where I had never been previously. None of it seemed set up to make it easy for someone with my particular kind of traumatic brain injury (TBI) to navigate. I’ve somehow made it through all the challenges.
But I am still in the middle of a major doozy: getting my Social Security disability straightened out.
The good news is that I was approved in July 2017. I applied in January 2017 and was told by several people to expect to be turned down, but was advised to appeal the denials. The information I got was that Social Security initially denies pretty much everyone, in order to weed out the ones who are just looking for a free ride on the gravy train. Apparently they figure that those are the people who will give up. I was denied twice and appealed twice.
As I said, I was approved early in July but didn’t find out about it until part way through August, but was given no details or any other information.
I went to the Social Security office and met with the worker assigned to my case. She said they needed some more information and grilled me for a while before telling me I should wait a week to ten days, then I’d receive notification of how much my monthly payments would be and when they’d start.
I waited two weeks. Nothing.
I tried for what seemed like forever to reach that worker by phone. Again, nothing. She never answered and never returned my calls.
So I went to their office again, and waited half the day before I was seen. The place was jam-packed; I thought it must free beer day or something.
Finally they called my name. I was taken to a different worker, who was behind a glass cage that made it feel like a prison movie where you talk to a prison inmate through a plexiglass shield.
We talked for a few minutes until she excused herself to go rummage around for some paperwork. What she said when she came back is mostly lost. To my TBI, it just sounded like word salad with argle-bargle dressing. I do remember she said they had made two requests for information from my social services agency but had gotten nothing in reply. She told me to talk with the agency and get them to send some particular information regarding how my housing is being financed.
My case worker at the agency said they had received no requests from Social Security. And they told me I would need to track down the info myself, as they didn’t have that info.
I have been around and around and around again and again and again trying to find out something and I am no closer than I was when I started. I’ve been met with people saying I need to talk to so-and-so, who then tells me I need to call somebody else. None of them has even tried to pretend that they weren’t annoyed that they even got the call.
But why can’t anyone tell me who has my housing information? They are covering the payments, and I know this to be true because I still have a place to live. And why is it even up to me figure out where that information is and who has it? Me, with a traumatic brain injury and no clue how their systems work.
A couple of weeks ago, my case worker called me when I was in the middle of a midday nap to tell me that a Social Security supervisor had been brought in, and that her own supervisor was now on it as well. Also, in my groggy state, I blurted out a name I hadn’t remembered before, the name of someone who arranged my current living situation. She said that she was going to approach that person, and that should be the missing piece to getting this mess wrapped up once and for all.
So problem solved. Right? I have no idea. I’ve heard nothing back since then. No one answers when I call, and no one is returning my calls.
But what I do know is that I’m not giving up. My stroke was hard on me, in a lot of ways that really matter, but it did not lessen the strength of my will or my determination. I will not just let it go, and this battle will mot be over until I win it.
***********UPDATE from Isaac Peterson (January, 2, 2018)***********
My Social Security disability payments started January 1, 2018, a solid year after I first applied. I am no longer stuck between a rock and a stupid place. I wonder whether I made somebody tired of picking up the phone and finding me on the other end. I know my TBI sure was tired of dealing with it. All I can point to from the experience is that it helps reinforce one of my core beliefs–don’t give up.
Isaac Peterson grew up on an Air Force base near Cheyenne, Wyoming. After graduating from the University of Wyoming, he embarked on a career as an award-winning investigative journalist and as a semi-professional musician in the Twin Cities, the place he called home on and off for 35 years. He also doesn’t mind it at all if someone offers to pick up his restaurant tab. Peterson also welcomes reader comments. Email him at firstname.lastname@example.org.