CHEFILEPTIC

20. my SS debut

 Well, I’ve now been-there-and-done-that enough to realize that when a seizure is happening, the brain is somehow allowing itself, or ‘tricking’ itself, into slipping into a sort of ‘glitch’ or ‘loop’ that does not benefit its own well-being–or allow it to use its own internal life-continuing mechanisms to proceed as usual, so it can simply keep ‘staying alive’ as its first priority.  It’s like the record started to skip, and the more times it skips, the more the defect is being reinforced, increasing the likelihood that it will keep skipping. 

To me, it is a suicidal-stumbling-glitch-routine that my brain has learned from way back before I’d ever remember.  It seems like once your brain knows how to glance at the Big Door, it’s only easier to look back at it, and you can find yourself getting stuck in this routine, until you wake up (yet again) after an undetermined length of time, figuring out the next new round of where-you-are and whats-a-goin’-on.

Somewhere around the time after I had that three-day round of seizures, lost about six weeks of memory, and finally had lost my job, I first learned from one of my doctors that my condition was ‘very severe’ and that I may never be able to work again.

I was then in my early thirties, and just like everybody else around me, I‘d been thinking of myself as being ‘just fine’ (except for maybe every now and then).  At that point though, it was time for me to step up and face the big, cold machinery that applies the official stamp of ‘permanently disabled’ in our country.

That’s when I began my first go-around with the United States Social Security system. 

During it I learned much, but admittedly, forgot plenty.  Years later I went through my old paperwork to piece together again what all had happened, because I’ve consistently had trouble being able to remember many details of that stretch of time, and a lot of that (not) lovely experience had (perhaps thankfully) disappeared from my memory.

I do remember enough to know very well that it was an insulting shit-show that made me, a tax-paying system-feeding hard-working American citizen, feel like I was ‘guilty’ until I had ‘proven myself innocent’, and that I failed to do that well enough and finally had given up—just like the machinery clearly wanted me to do.

Later on down the road, I (unfortunately) had to go through a ‘second round’ with them, which required that I review and re-organize all kinds of medical records from my past. 

Somewhere along the way, I had made a folder on my computer desktop called SS.  I had gotten so tired of typing out s-o-c-i-a-l_-s-e-c-u-r-i-t-y a million damn times that I had just started labeling all related files with SS in their names, because I’d know what that meant, and I would be able to find them later if I had to. 

Of course, this had nothing to do with any kind of oppressive Nazi regime references that some might infer from these initials…. (right).

I know that I had gotten some legal advice before that first round, and had been informed that based on what I had been told by my doctors up to that point, I should go ahead and apply for Social Security disability benefits.  The logic was that, for one thing, there was no reason to think that the seizures would be cured, so I’d likely have them for the rest of my life.  Also, as it still is now, the system’s always so backed-up that it could have taken a year or more to get a decision, and then it was likely that I’d have to appeal that decision up to four times, which could take years.  So, applying then was a sooner-is-better situation, even if I really wanted to return to work.

What you’re doing when you apply for Social Security disabled status is telling them that you have a medical disability that prevents you from working in your customary line of work, and that this is not going to change.  Therefore, you are asking to get paid the same money that you would otherwise be waiting to get when you reach retirement age, when they begin to send you checks every month based on what you’ve been feeding into the system as you’ve had that little slice taken out of all your paychecks during your working years. 

When you attempt to get ‘disabled’ status, you are just asking for that retirement age-line to be moved up, more or less, because you are asking for access to the same money from the same machine–just sooner than you would have, had you not become disabled.  You are trying to retire early, because your doctor has told you that you can’t work, whether you want it to be that way or not.

Bummer is, both back then and now, the American Social Security system really is bogged down. 

And no matter how crazy it has been to jump through all the hoops that this system’s thrown in front of me, I’ve come to recognize that it’s not any one person’s fault. That’s why any time I’ve had to deal with someone on the phone or in their office, no matter how tempted I’ve been to get furious, I’ve tried to remember to visualize what that person’s dealing with.  I’ve tried to take a deep breath and see myself as just another case in front of whoever’s working in that giant system that’s just trying to make their own living; none of them built the machine; they’re all just gears turning within it.  They’re under pressure to weed out all the illegitimate cases that get plopped in front of them, and sadly, it’s most of them.

So, with that being their daily working background atmosphere, I naturally had to expect that they’d take a look at my case and stamp it with “rejected” –which they did, of course.

This wasn’t a quick rejection to get, to begin with.  When you apply for Social Security Disability Insurance benefits (SSDI), you have to have first already used up six months’ worth of short-term disability (SDI), which more or less is the same barrel you get fed from if you become unemployed.  That’s a state-level machine that you also are feeding with deductions from your paychecks as you work; it’s just that this ‘smaller’ system is in the hands of the state you live in, rather than Social Security, which is operated by the federal government.

So, when you become unemployed due to a disability, you are in the same boat you’d be in if you got laid off.  Soon you begin to get regular checks in the mail, but they are much smaller than the ones that you were earning when you were working.

The federal system says you’ve got to drink up that juice box first, then come see them and apply if you still think you’re disabled.  And don’t think that means that they start paying you…  you’ll have to win your approval, and if/when you do, you’ll be back-paid to the point when you applied–but until you ‘win’ your ‘permanently disabled’ status, you’re on your own.

In my case, when I first was told I was disabled, doctors had restricted me from working with any sharp tools or near any hot surfaces, near any stairs or possible ‘high-fall’ situations (like ladders and loading docks), driving, operating any machines, you name it.  And I had been told this was not going to change.  So, working any job I had ever done was now off-limits.

Worse, I learned that if I ‘got caught’ doing any work including any duties within these restrictions my doctors had listed, I could blow my chance to apply for SS again for my disability, forever. 

So, it was officially not time for me to work, at least not doing anything I had ever done like using, let’s say, tools and any other ‘dangerous type-stuff’.  But I had to work; I just knew I could not do it ‘on the table’–so I had to take whatever jobs I could do, for cash, so I could pay my bills and eat.  If I had to explain this to a judge today, even if I might be getting myself locked up forever for whatever terrible list of federal crimes I might have committed back then, I’d have to confess that I just plain fucking had to work to stay alive.

And work I did… work that was far more dangerous than the kitchen work I had always done before—usually gutting old houses for remodeling, standing on ladders with a Sawzall while reaching out to cut down old shit that was falling all over.

When the SS system first puked me out, I was referred to the Department of Rehabilitation of Santa Cruz County for ‘assessment’ and ‘vocational rehabilitation’.  This means the big system said ‘no’, and referred me back to the local system so I could get ‘evaluated’ for my abilities, and maybe even ‘guided’ into a job that I could do with my disability.

And boy, it definitely helped nice people spend nice time and nice money not helping me a fucking bit.

I had forgotten about the bizarre combo of experiences that side-trip had entailed, until I opened up my old book of records.  Turns out, this facility, located just a couple blocks from my old job at the Homeless Center, had referred me first to a neuropsychologist for an evaluation–which apparently took two long appointments worth of numerous tests to complete.  I found a copy of the report this doctor had made, and it was kind of a trip to review, I must admit.

Next, with this report in-hand, the Rehabilitation Counselor that was handling my case had to evaluate me over a five day stretch, and then make another report as well.  This report was to determine: “Aptitudes, Interests and Strengths, Limitations and required accommodations, Transferable skills (and) Four feasible job goals.” 

It resulted in a big list of different career examples I might have been able to consider, because the evaluation had proven I could ‘handle’ them.  Wow!  Turns out I could have been a Sausage Maker, or a Park Naturalist, or a Radio and Television Announcer, or a number of other wonderful career-jobs, which were supposedly within my ‘skillset’.  Seriously, all of these jobs would have been just fine with me at that point.

Next, the Rehabilitation Counselor had then considered the restrictions listed by my doctor–including my being unable to drive–and this very much narrowed down the options.

So I was then guided to a job–the only job that I would supposedly be able to do from the giant list of positions that they would supposedly have been able to help me find in the area. 

Next, they had to do a ‘live scan’ to make sure I had a clean background to do this job.

And this is what they came up with: when all planets had finally aligned… I could be a Substitute Custodian for the county school district, BUT–only when I would be able to work shifts that I could reach by using the local bus system.

So, this meant if a custodian working for the Santa Cruz county public school district was feeling sick, and knew that they were already sure that they were going to call out the following day, I’d be on the list of subs that could be contacted to cover the shift–but only if the bus could get me there and back for it (which was not most of the regular shifts).

What can I say, I was playing their game—asking what system was in place to deal with me and seeing if it really could help me find work.

After I waited like a month, and got absolutely zero custodian-substitution-work, I finally told my counselor that I was going back to the kitchen, where at that time I had already worked for like seventeen years, because I was then doing work that was more dangerous than any kitchen work to get by, and I knew it was safer than many of the things I was actually doing for cash. 

I had followed the orders, I had filled out the papers, I had waited in the lines and reception areas, and I had snuck in whatever work I could find around the edges.  I was working, after all, and I was tired of hiding it.  I was not raised to be either lazy, or a chronic liar, and enough was enough.

Somehow, after I had explained this, I was then officially ‘allowed’ to return to my ‘customary work’ in the kitchen. 

And I did so.

Soon I found a night club that had just opened in Santa Cruz.  One of the three owners was a medical doctor, and he listened to my story as he interviewed me and realized that he could get a pretty-darn experienced manager at a darn reasonable salary, if they could just basically ‘look the other way’ every now and then if I happened to flip out. 

I was fortunate to have this understanding; he not only empathized with how ridiculous and frustrating of a year I had just gone through as ‘the system’ chewed me up and spit me out, but he also knew enough as a doctor to understand that I had ‘the spell’ to warn me if I started to seize, and he knew the critical role this could play in keeping me (and those working around me) safe, if I did ‘go off’ while working. 

Unfortunately, like so many start-up businesses, for many reasons, the place couldn’t sustain itself and it closed within about a year and a half.  Like much of this time period, I know this mostly because I’ve done that whole research-thing more so than because I have normal, working memories.

Thank God I’ve saved boring stuff like resumes, emails, and old menus and prep sheets and a few pictures from the jobs I’ve worked along the way.  More than once now, the pictures have made me realize how many great folks I’ve worked both for and with—and if by any chance any of you happen to be reading or hearing this, I didn’t mean to forget you… please don’t take it personal. 

It seems like there’s still a chance I might get the memories back, and I really do want them back.