I am ever amazed by websites. Currently I am amazed by
http://www.yourtickettowork.com/
I was sent by mail a letter from Social Security and encouraged to register for the your-ticket-to-work program which the federal government subcontracted to MAXIMUS. No instructions were sent to me in terms of how to navigate the site despite the fact that I am a TBI. One would think given the people who will be using the site something like registering would be easy to follow step by step, obvious link to obvious link- that the information would be front and center.
I have a brain injury with damage to my visual cortex which means highly complicated visual fields are difficult for me. I need for information to be front and center. An that's part of why I don't understand how the your-ticket-to-work site- was designed for or by MAXIMUS. I don't understand how this page was designed considering it's audience which includes people like me with organic brain differences and I've come to the conclussion the site wasn't designed for the people in which MAXIMUS has been subcontracted to provide a service for. Me and peolpe like me- we're not even on their radar.
The task assigned to me was and is: register for the your-ticket-to-work program but the site clearly wasn't designed for registering. It's primary purpose in terms of design is not registering the disabled or providing useful information for them. The "consumers" were not are not the audience which the site was designed for. Whether this was and is conscious or unconscious I don't and can't know.
Whoever designed the site felt the most important information was and is "how many people are elligible". Personally I don't care how many people are elligible it's not relevent information for anyone actually using the service. The information that is front and center is relevent from a PR stand point, from an investor or business participant standpoint but not from a customer standpoint, not for those people for which the program itself exists.
But then again is that why the program exists as a matter of practice? Does it exist to deliver services or to transfer taxpayer dollars to private for profit companies under the pressumption that socially services are just another widget?
Subcontracting services to a private entity essentially means that money for the help and support of the disbaled is being funneled to a private for profit company- a company that doesn't comsider registering the disabled into their program a high enough priority to provide an easy or even accessible way to register.
People are worried about socialism? Umm - gee tax payer dollars being diverted directly to corporations- the very entities that fund our elections, that lobby the congress on both the federal and state levels. To me that sounds a lot scarier. But what do I know - I have a brain injury.
Back to my adventures with corporate bureaucracies which are supposed to be so much more efficient than a government. I have two tasks: register for the your-ticket-to-work program and pick a Medicaid HMO- that's right folks Medicaid has been subcontracted to the private sector.
The same we-did-not-construct-the sites-to-be-functional-outside-of-PR purposes is present in the HMO options I need to choose from regarding Medicaid in the state of SC. Six companies and with the exception of one HMO every site was designed not for efficiency but as a PR device. On most of the sites it is impossible to get simple provider information, on only one site can you type in the name of the doctor and his address and get an answer as to whether s/he's on their provider list
The HMO's were subcontracted of the argument thatprivate is better than public -corporations do it smarter and leaner. Really? because that's not been my experience so far.
Smarter and cheaper would be a simple fill in the blank search avaliable for every Medicaid HMO to check if your doctors are on their lists. Only one SC. Medicaid HMO provider has the ability to quickly check their providers online. Five of the six providers require that you the consumer call a 1-800 and that every individual provider inquiry be handled by hand, by a paid tele-person checking the list for you. Instead of letting the cutomer do the work these HMO would rather employ tele-people. How exactly is that efficient?
Only one HMO essentially made use of the internet in their site's design providing a simple fill in the blank search connected to their list of providers. All the other Medicaid HMO's it's call a 1-800 number so a person can type in those fields for you? Totally friggin' inefficient. If they can't do even that simple, simple action of filtering waste in the design of their own system how exactly is it that they could ever hope to manage healthcare efficiently?
And as for MAXIMUS, they can't even manage to provide an easy, no hassle way to register for the governement program they are now paid to dispense to the citizens for the governement. But maybe, maybe Maximus is just like the health insurance industry: existing not to provide the product in which they've been tasked but to impede consumers/citizens from gaining access the product or program itself.
That's how it seems from my perspective.
This American idea that private indutry whose sole purpose is to make a profit is the best means of administering services is not correct. Who delivers more for less- that would be non profits. And even on their sites there is this same issue of "who did you design this page- this site for".
Mostly the websites seem to be constructed for PR practices- as an online PR package- that's what I see. The sites weren't designed for users they were designed for press, investor information but not to get any actual work done- and I really don't get that
Monday, March 29, 2010
Monday, March 8, 2010
वेल थिस अनोठेर फिने मेस इ'वे गोत्तें म्य्सेल्फ़ into
Title: Well this is another fine mess I've Gotten myself इन्तो
3.3.10
“You’re in the bull’s eye,” my insurance agent said.
“What’s the bull’s eye?”
“Oh like this girl I had girl- two car accidents in under 10 days.”
Yeah, Yep, ah-huh- my car was hit again, and again I wasn’t in it, and again it was in the parking lot but -nice change since -oh a few weeks ago- the guy stayed for the police report and giving insurance info because I was a little freaked out. I mean whose insurance company would believe they got hit and run, again, same address, same time of day….
I felt like asking the agent “how long does the bull’s eye last,” except there’s no how long it will last: because I live there. Which seems just wrong as I’m very boring person who likes to garden.
The following is the mess that came up in between my car going from not a dent to three panels needing to be replaced:
2.28.10
I went to the post office the other day to send a registered letter; the postal agent suggested certified and so a plain white envelope was appropriately tagged.
Like all messes there was a building process. And like any mess it began the same as items not put in their proper place because where is the proper place? What category does this fall in because its not at all apparent? That and I don’t read people well though now I don’t think that’s accurate; I think it’s more that I’ve been resisting that and the more I see of the world the more I know why.
Last year upon reaching out and getting an email that was very honest about her present circumstances I’d been forthright about my own with an old high school friend about my own. I received a curt reply offering to research and direct me “to resources in your area”. As I was already living in a local resource, the shelter, and the shelter’s homeless advocate was working on my case and the shelter matches people with resources as well as a local neurophysiologist seeing me pro bono- there was really no need for a reply. What I needed was a friend to talk to and I certainly wasn’t going to find that as I had become what homeless people are: non- persons.
Though lack of healthcare and health related issues is and has become the leading cause of homelessness you’ll still find the old stand bys: addicts of one sort or another, thieves, bullies, the mentally ill, dementia and Alzheimer’s patients, the working poor, the out-of-work-for-so-long and then of course there was the hourly staff. The shelter, for me those 351 days were like being home again. I needed some place I could be honest, some place where keeping my head down and my opinions to myself wasn’t the golden rule of self preservation and so I chose to try it again, tell someone again -this time with a guy I’d known in college and that’s how I got in my most current mess. What gets me is I never asked for help, as a rule I don’t. Nor do I share the circumstances of my life because in my experience all either buys you is a first class ticket to someone else’s bullshit. Sorry but that’s how I see it: show someone you have a jugular and watch them leap for it. If I’d remembered Ramon then as I do now I could have, should have seen some portion of this coming.
Over the weeks and then months that followed he had talked of seeing each other when he came to town. He came to town after which I received a message stating that he had been too busy, to which I took no offense- I mean who wants to visit an old friend who’d become homeless.
Ramon and I kept exchanging social network messages, eventually he asked for my email and he talked about meeting me somewhere on his upcoming visit. As I had my car back I told him I could easily meet him somewhere though I was no longer living at the shelter. Officially because I was garnering unemployment, unofficially because they’d nearly lost their license after one night when I wouldn’t look the other way on something. I’d tell you how but why bother- ya’ wouldn’t believe it.
Hearing of my plight a former resident of the shelter offered me a place to stay for as long as I needed “for free so you can save up and get your own place”. Of course I’d had a nagging bad feeling about that, something I couldn’t put my finger on, just something in her eyes that had always made me nervous- too like my mother. So I did what I do: I listened to the words, recorded them and presumed them as truth which I’m learning is the single dumbest thing anyone can do in this world.
On Ramon’s next visit he wanted to meet and I suggested the Starbucks on Calhoun and East Bay . Truth was I was excited, someone from my past would see me even though I’d become “one of those people”. I was early and got a spot of coffee, Ramon came walking through the parking lot.
“You look good,“ he said, correcting himself “better than I would have expected”.
As long as you can shower regularly, have access to an iron and have clean clothes even with only a 12 by 24 by 15 locker to live out of- you’d be surprised how not homeless a person can look. A shelter resident and I had once been talking outside of the library, waiting for the three hour window it opens on Sunday as a man stood behind us. That we lived at the homeless shelter was mentioned and his face changed like he’d been shocked and suddenly was re-evaluating everything he took as true in the moments preceding because Ann and I never looked homeless.
“Thanks,” I said to Ramon’s compliment as to looking good though I didn’t know what to say to his surprise of whatever it had been that he’d been expecting.
There was a weird tense vibe that I happily ignored for an old friend had come to see me, would see me. Someone not from the world I’d been in for the last year. He kept saying “if I’m going to help you,” and then would ask more about my limitations. He must have said “if I’m going to help you” a dozen times and I became more and more uncomfortable because I hadn’t asked for help. I hadn’t asked for so much as the cup of coffee I bought for myself and drank from as he sat there drinking a small overpriced Naked fruit drink and seemingly conducting an official inquiry.
I hate talking about the TBI with people who don’t know TBI because they don’t get it and even if you tell them, let’s say perspective employers about things like non narrative based sequential difficulties or the inability to group tasks or just how far and bad neural fatigue can throw someone, me, they’ll invariably sit there hearing the words, having no idea what they mean in practice but somehow believing they do.
“ I wouldn’t know there was anything wrong with you sitting and talking with you,” Ramon said and then more with the: “if I’m going to help you”. As if I’d ever asked.
Being able to present well had been something I’d worked on, how I’d kept getting jobs and then getting fired on a near quarterly basis for nearly three years. I’d worked hard on speech for that very reason and because seeing that look on someone’s face when you’re trying your hardest but you can’t mask it and they know there’s something wrong with you because your words come out wrong or slurred or you just plain can‘t maintain the pace of normal conversation. I’d absolutely hated that and still do when I get taxed enough and those bits of filament in my head can’t maintain the load burden or properly direct the bio-electrical traffic?
I was not at all enjoying my visit with Ramon, his ride showed up and I was kind of glad. When Michelle and her husband arrived, for a moment, it got a little worse. The husband looked at me like he was angry with me, like he didn’t me like before he even met me. His wife Michelle was nicer, very - what’s the word when someone is almost excessively friendly? But I knew I mean I understood or at least I‘d thought I did.
Being homeless makes other people really uncomfortable, that you are, that that’s who (or what) is in front of them. I’d seen it at the shelter. Like it’s a disease they’re afraid they’ll catch. Most every night volunteers would come to “serve” dinner and a good deal, most, most of the time- if you try and make eye contact with a volunteer or smile they look away. There are exceptions of course because a few groups sit at the tables and eat the meal they’ve brought to the homeless people with the homeless people. I generally felt badly for them, the volunteers who’d introduce themselves, sit and stare at their plate. At which point I’d become a communications major again and start asking them questions. People almost always relaxed when they started talking about their work or family or where they were from, maybe by gaining a certainty ‘this‘ could never happen them. For me the worst ones were the Bible beaters who like talking about “the end of times” a lot and are convinced the only reason a person could be in such a situation is that they don’t have God (because God obviously doesn’t have them).
I never ascribed to that philosophy, the one where disaster or disease are punishments for those who follow/ed a different book of God, or were of a different sect, etc.. To me that’s always been about as ungodly a perspective as a human being can have but as that seems a human specialty I guess it shouldn‘t be too very surprising.
Over my time at the shelter I came to believe the poor and the ill aren’t those being punished but are there as a challenge to everyone else like the universe saying “I see you and I raise you“. I had and have no illusions about where that put/s me as I’d been one of those people who locked my doors and looked away as I’d drive past that particular section of Meetings Street until of course I was living there. I’d been just as afraid of it as anyone.
So that Ramon, Michelle and Mark were all uncomfortable, I could understand that. So - everyone uncomfortable and me thinking I’d understood why it hadn’t been like sitting and talking with a friend, why there’d been no warmth. The emails hadn’t struck me that way but I can sit and pound on the keys like I’m talking to my best friend so I guess I’m not really in a position to discern that sort of thing.
Michelle smiled some more and introduced her daughter and said they were going to a get Mexican- did I want to come?
I’d already bought a coffee and I was occasionally starting to pick up a New York Times and the car and the small storage place I had gotten near the shelter so I could have seasonal clothes changes… Did I say no? or was it just about to come out of my mouth when Ramon said “It’ll be on me, come”.
I knew where the Mexican place was; I’d become familiar with parts of downtown that I never had expected to be familiar with. I knew where Michelle was talking about, across from that great old brick MUSC was renovating that used to have “Ishmael“ written in its windows facing I-26. Now I remembered that building from the perspective of the bus and had the noticed Mexican restaurant simply because of all the plants.
When at the restaurant I asked what Ramon was having, trying to find out what the price point was.
“Order whatever you want,” he said.
So I did. Everyone ordered drinks except for me, ever sporting a Camelback filled with water.
Mark or Michelle. I don’t know which but somebody prompted me to talk about the brain injury, how it happened, what kind of symptoms I’d had or was having.
I might have said what I was learning not to say- “ it’s much better than it used to be”. That phrase had been problematic because once a person for the state hears that anything else you say is just disappears. I think I mentioned the flashing triplicate thing or it could have been differing visual formats or why the tinted (polarized) glasses to flatten out a the three dimensional plane. In other words, I don’t know what made Mark say “You damaged your visual cortex,” smiling -which had been an odd sudden change in his demeanor.
“Yes,” I exhaled, started tearing up but held it together.
“Mark and I have both worked with TBI’s,” that had been how they met.
I started to cry. I was so happy because that’s worst thing about it, nobody knows what you’re talking about or can contextualize it. They’ll try to compare to their own experience: visual floaters, being someplace loud for a few hours and then really enjoying the quiet. Like “a rupturing aneurysm- yeah I get headaches,” as if such unlike things can even be likened.
“Why didn’t you tell me?” I asked looking at Ramon, still not at all getting the picture as to why he wouldn‘t have told me we‘d be meeting with two people versed in TBI.
“I didn't remember- forgot,” he said but not in my eyes, nope his eyes were exactly nowhere in my line of sight, looking down and away. Which of course I completely ignored because I figure- not so very deep down- I didn‘t want to see it.
“Oh, okay,” I said before staring to talk to Michelle again, and Mark. Ramon sat quietly eating his tacos.
How did I frame Ramon not telling me that I was about to meet two professionals versed in brain injury? What self-explanation did I provide for him “forgetting” that he was about introduce a TBI to two professionals versed in TBI?
“kind of sweet really, Ramon just thinking of Michelle as his friend and Mark as her husband… what they did isn’t who they were- . Nice really, just who they are not what they do...”
Yep. That’s how this idiot framed it.
The next day I got a text from Ramon asking if we could meet up, he wanted to get something to eat. A little odd since he was staying at Michelle and Mark’s, they drove BMW SUV and thus there was probably food available…Would I pick him up at the Chick Fillet across from Roper’s?
Yes, yes I could do that. We met up, Michelle dropping him off and still very smiley suggesting I come to the house when we were done. As Chick was closed and Ramon wanted pizza I took him to the best place in town: Andolini’s. He offered me a slice and we sat outside, though too close to a speaker really. He still seemed tense and depressed though I didn’t take it personally and was kind of amazed that of the two of us I was the lighter of spirit. He mentioned how Michelle didn’t really have any girlfriends and was in need of company. I asked about his dating life, job, etc. - it was all some form of bad. His students? Same thing. Nothing good at all in life to hear him tell it.
The first surprise: He had said as I drove him to Michelle’s that he was trying to get a job in the US, in Charleston or Atlanta “and you could live with me”. I told him the truth I’d be needing income adjusted housing - no way I could afford anything else. “But no, no you could live with me for free”. There was something in his voice I didn’t like. “Ramon we’re just friends that’s all it is, was and is ever gonna be,“ and man that felt familiar, this all felt too familiar. His head went down the same way it did in the restaurant like a child being caught, like when he said he’d forgotten that Mark and Michelle had both worked with TBI’s for years.
The second surprise came when I drove him back to Michelle and Mark’s - under half a mile from the Chick Fillet which explained the weird look he got on his face when Michelle had suggested I come over for dinner as she dropped him off. I’m still not entirely sure what that was all about but the only thing I can presume is that it was a security protocol: she’s been homeless do we really want her knowing where we live?
The next surprise Ramon left for upstairs to his room leaving Michelle and I to talk which we did and I got complimented a lot which was nice but I think should have alerted me to everything I wasn’t catching: that there were hidden agendas a foot.
We all had dinner together and for perhaps the rest of my life I’ll always be glad when anyone presents me with something other than: fried chicken, white rice and canned green beans. The volunteers’ favorite meals to serve. That and sugery sodas and baked desserts at ever meal- just what the homeless need: low nutrient, high fat, high sugar. I know it’s wrong but within a few weeks I was having huge cravings for fresh produce and when they volunteers would say “Lord Jesus , please let this food nourish their bodies..” I’d think well- yes, let a miracle occur.
It was past sunset when I said I had better head back to Mount Pleasant, Michelle and Ramon were still talking to me in the driveway as she asked what year my car was and commented on how good it still looked for a six year old car. Then Mark came from basement and though it made no sense I stood there in the driveway feeling surrounded.
Michelle said I could spend the night which seemed odd as I had a place to stay. She went on “you could sleep on the couch…ooorrrr you could sleep with Ramon in his room?” which seemed an odd thing to say. “No,” and I just wanted to bolt like a horse from the paddock. This had been the second time in a few hours that something…I stood in their drive and couldn’t quite process, what- the-hell- kind-of-impression are these people under-?
Then Michelle started talking about God and bringing people into our lives for a reason, you brain injured -we trained in brain injury and that’s when I should have known but like the idiot I am I started talking about two books: Saved by the Light and the one by a guy who’s been hit by lightening a couple of times.
“Danion Brinkey- I was just talking to him on the phone,” Mark said, standing there holding the phone which struck me; I can’t even say how, it just struck me.
Before I left Ramon said “Well- now you have people you can depend on in Charleston”.
“Thanks,” I said and gave him a hug goodbye. Many weeks later I struggled to wrap my mind around something: why would he have said that? Why would he have said that when now he’s saying “Michelle does that she drops out of people’s lives, she’s unreliable”. Why would he have presented her as the opposite? And why, why after she requested a letter from me granting her the authority to speak to housing officials and gain access to my records, why would she then not show up for two housing appointments Why would someone say “I’ll be your patient’s advocate, I’ll keep track of everything…” and then do the exact opposite?
Prior to all of which Michelle had driven me to lunch one day and went on a - well she was the only one talking and it started as “You know physical attraction- I mean I wasn’t physically attracted to Mark at first”. A long tale ensued and there was a point she kept referring back to, what her own therapist had told her , about Mark of course, “give yourself the opportunity to be loved by someone who can love you the way you need to be loved”. But every time it didn’t feel like she was talking about she and Mark, it felt like she was trying to introduce an idea I was resisting. So I typed a letter to Ramon making myself really clear yet again and this, this had happened in college too. It made me uncomfortable then but now, now twenty years later it pissed me off. I mean how many different ways does a female have to say no before its understood ?
So why even though I had changed my mailing address with the Housing Authority to the apartment I was and am now in and why after getting a letter from them confirming my address change for notifications from Michelle’s to my new address-Why are they mailing her my notices?
Why for over two months now has she refused to return the letter and/or acknowledge she is aware those powers were rescinded? Why would I get a notice late after she or Mark forwarded it? Why was I culled from the Housing Department’s wait list- oh because for some reason it went to Michelle and Mark, and for some reason I didn’t receive it until after the due date. Three weeks transit time in a town this small.
And now, now two months later: I’ve sent an informal note, I’ve left a phone message and sent a text and yet she won’t just write a note acknowledging that she is aware that she is not empowered to speak on behalf regarding housing issues. No reply even after I asked her to spare me the expense of sending a registered letter. Nope no reply, so a registered letter.
I n closing, this sort of thing is precisely why I don’t and never really did tell people what’s going on in my life because mostly it seems like all people do with that sort of information is 1) not believe me 2) find an angle so that they can a) find a new place and interesting place to twist a knife or b) enact their own personal bullshit.
So now I have more non narrative sequentials (not a word?- oh I’m making it one( “Abrahamic is/wasn‘t a when I typed it yet I‘m reading a book where its all over the place- and damn it I tagged it first)). So more non narrative sequentials to tackle with my brain that really, really doesn’t do that sort of thing well. Michelle had said she’d make me a color coded work book- but I’ve tried that before and the problem becomes the subsections- I always wind up with so many friggin subsections within a category.When I’d told him where I’d been living and about the TBI he hadn’t been curt and we even started exchanging conversation back and forth via a social network.
“You’re in the bull’s eye,” my insurance agent said.
“What’s the bull’s eye?”
“Oh like this girl I had girl- two car accidents in under 10 days.”
Yeah, Yep, ah-huh- my car was hit again, and again I wasn’t in it, and again it was in the parking lot but -nice change since -oh a few weeks ago- the guy stayed for the police report and giving insurance info because I was a little freaked out. I mean whose insurance company would believe they got hit and run, again, same address, same time of day….
I felt like asking the agent “how long does the bull’s eye last,” except there’s no how long it will last: because I live there. Which seems just wrong as I’m very boring person who likes to garden.
The following is the mess that came up in between my car going from not a dent to three panels needing to be replaced:
2.28.10
I went to the post office the other day to send a registered letter; the postal agent suggested certified and so a plain white envelope was appropriately tagged.
Like all messes there was a building process. And like any mess it began the same as items not put in their proper place because where is the proper place? What category does this fall in because its not at all apparent? That and I don’t read people well though now I don’t think that’s accurate; I think it’s more that I’ve been resisting that and the more I see of the world the more I know why.
Last year upon reaching out and getting an email that was very honest about her present circumstances I’d been forthright about my own with an old high school friend about my own. I received a curt reply offering to research and direct me “to resources in your area”. As I was already living in a local resource, the shelter, and the shelter’s homeless advocate was working on my case and the shelter matches people with resources as well as a local neurophysiologist seeing me pro bono- there was really no need for a reply. What I needed was a friend to talk to and I certainly wasn’t going to find that as I had become what homeless people are: non- persons.
Though lack of healthcare and health related issues is and has become the leading cause of homelessness you’ll still find the old stand bys: addicts of one sort or another, thieves, bullies, the mentally ill, dementia and Alzheimer’s patients, the working poor, the out-of-work-for-so-long and then of course there was the hourly staff. The shelter, for me those 351 days were like being home again. I needed some place I could be honest, some place where keeping my head down and my opinions to myself wasn’t the golden rule of self preservation and so I chose to try it again, tell someone again -this time with a guy I’d known in college and that’s how I got in my most current mess. What gets me is I never asked for help, as a rule I don’t. Nor do I share the circumstances of my life because in my experience all either buys you is a first class ticket to someone else’s bullshit. Sorry but that’s how I see it: show someone you have a jugular and watch them leap for it. If I’d remembered Ramon then as I do now I could have, should have seen some portion of this coming.
Over the weeks and then months that followed he had talked of seeing each other when he came to town. He came to town after which I received a message stating that he had been too busy, to which I took no offense- I mean who wants to visit an old friend who’d become homeless.
Ramon and I kept exchanging social network messages, eventually he asked for my email and he talked about meeting me somewhere on his upcoming visit. As I had my car back I told him I could easily meet him somewhere though I was no longer living at the shelter. Officially because I was garnering unemployment, unofficially because they’d nearly lost their license after one night when I wouldn’t look the other way on something. I’d tell you how but why bother- ya’ wouldn’t believe it.
Hearing of my plight a former resident of the shelter offered me a place to stay for as long as I needed “for free so you can save up and get your own place”. Of course I’d had a nagging bad feeling about that, something I couldn’t put my finger on, just something in her eyes that had always made me nervous- too like my mother. So I did what I do: I listened to the words, recorded them and presumed them as truth which I’m learning is the single dumbest thing anyone can do in this world.
On Ramon’s next visit he wanted to meet and I suggested the Starbucks on Calhoun and East Bay . Truth was I was excited, someone from my past would see me even though I’d become “one of those people”. I was early and got a spot of coffee, Ramon came walking through the parking lot.
“You look good,“ he said, correcting himself “better than I would have expected”.
As long as you can shower regularly, have access to an iron and have clean clothes even with only a 12 by 24 by 15 locker to live out of- you’d be surprised how not homeless a person can look. A shelter resident and I had once been talking outside of the library, waiting for the three hour window it opens on Sunday as a man stood behind us. That we lived at the homeless shelter was mentioned and his face changed like he’d been shocked and suddenly was re-evaluating everything he took as true in the moments preceding because Ann and I never looked homeless.
“Thanks,” I said to Ramon’s compliment as to looking good though I didn’t know what to say to his surprise of whatever it had been that he’d been expecting.
There was a weird tense vibe that I happily ignored for an old friend had come to see me, would see me. Someone not from the world I’d been in for the last year. He kept saying “if I’m going to help you,” and then would ask more about my limitations. He must have said “if I’m going to help you” a dozen times and I became more and more uncomfortable because I hadn’t asked for help. I hadn’t asked for so much as the cup of coffee I bought for myself and drank from as he sat there drinking a small overpriced Naked fruit drink and seemingly conducting an official inquiry.
I hate talking about the TBI with people who don’t know TBI because they don’t get it and even if you tell them, let’s say perspective employers about things like non narrative based sequential difficulties or the inability to group tasks or just how far and bad neural fatigue can throw someone, me, they’ll invariably sit there hearing the words, having no idea what they mean in practice but somehow believing they do.
“ I wouldn’t know there was anything wrong with you sitting and talking with you,” Ramon said and then more with the: “if I’m going to help you”. As if I’d ever asked.
Being able to present well had been something I’d worked on, how I’d kept getting jobs and then getting fired on a near quarterly basis for nearly three years. I’d worked hard on speech for that very reason and because seeing that look on someone’s face when you’re trying your hardest but you can’t mask it and they know there’s something wrong with you because your words come out wrong or slurred or you just plain can‘t maintain the pace of normal conversation. I’d absolutely hated that and still do when I get taxed enough and those bits of filament in my head can’t maintain the load burden or properly direct the bio-electrical traffic?
I was not at all enjoying my visit with Ramon, his ride showed up and I was kind of glad. When Michelle and her husband arrived, for a moment, it got a little worse. The husband looked at me like he was angry with me, like he didn’t me like before he even met me. His wife Michelle was nicer, very - what’s the word when someone is almost excessively friendly? But I knew I mean I understood or at least I‘d thought I did.
Being homeless makes other people really uncomfortable, that you are, that that’s who (or what) is in front of them. I’d seen it at the shelter. Like it’s a disease they’re afraid they’ll catch. Most every night volunteers would come to “serve” dinner and a good deal, most, most of the time- if you try and make eye contact with a volunteer or smile they look away. There are exceptions of course because a few groups sit at the tables and eat the meal they’ve brought to the homeless people with the homeless people. I generally felt badly for them, the volunteers who’d introduce themselves, sit and stare at their plate. At which point I’d become a communications major again and start asking them questions. People almost always relaxed when they started talking about their work or family or where they were from, maybe by gaining a certainty ‘this‘ could never happen them. For me the worst ones were the Bible beaters who like talking about “the end of times” a lot and are convinced the only reason a person could be in such a situation is that they don’t have God (because God obviously doesn’t have them).
I never ascribed to that philosophy, the one where disaster or disease are punishments for those who follow/ed a different book of God, or were of a different sect, etc.. To me that’s always been about as ungodly a perspective as a human being can have but as that seems a human specialty I guess it shouldn‘t be too very surprising.
Over my time at the shelter I came to believe the poor and the ill aren’t those being punished but are there as a challenge to everyone else like the universe saying “I see you and I raise you“. I had and have no illusions about where that put/s me as I’d been one of those people who locked my doors and looked away as I’d drive past that particular section of Meetings Street until of course I was living there. I’d been just as afraid of it as anyone.
So that Ramon, Michelle and Mark were all uncomfortable, I could understand that. So - everyone uncomfortable and me thinking I’d understood why it hadn’t been like sitting and talking with a friend, why there’d been no warmth. The emails hadn’t struck me that way but I can sit and pound on the keys like I’m talking to my best friend so I guess I’m not really in a position to discern that sort of thing.
Michelle smiled some more and introduced her daughter and said they were going to a get Mexican- did I want to come?
I’d already bought a coffee and I was occasionally starting to pick up a New York Times and the car and the small storage place I had gotten near the shelter so I could have seasonal clothes changes… Did I say no? or was it just about to come out of my mouth when Ramon said “It’ll be on me, come”.
I knew where the Mexican place was; I’d become familiar with parts of downtown that I never had expected to be familiar with. I knew where Michelle was talking about, across from that great old brick MUSC was renovating that used to have “Ishmael“ written in its windows facing I-26. Now I remembered that building from the perspective of the bus and had the noticed Mexican restaurant simply because of all the plants.
When at the restaurant I asked what Ramon was having, trying to find out what the price point was.
“Order whatever you want,” he said.
So I did. Everyone ordered drinks except for me, ever sporting a Camelback filled with water.
Mark or Michelle. I don’t know which but somebody prompted me to talk about the brain injury, how it happened, what kind of symptoms I’d had or was having.
I might have said what I was learning not to say- “ it’s much better than it used to be”. That phrase had been problematic because once a person for the state hears that anything else you say is just disappears. I think I mentioned the flashing triplicate thing or it could have been differing visual formats or why the tinted (polarized) glasses to flatten out a the three dimensional plane. In other words, I don’t know what made Mark say “You damaged your visual cortex,” smiling -which had been an odd sudden change in his demeanor.
“Yes,” I exhaled, started tearing up but held it together.
“Mark and I have both worked with TBI’s,” that had been how they met.
I started to cry. I was so happy because that’s worst thing about it, nobody knows what you’re talking about or can contextualize it. They’ll try to compare to their own experience: visual floaters, being someplace loud for a few hours and then really enjoying the quiet. Like “a rupturing aneurysm- yeah I get headaches,” as if such unlike things can even be likened.
“Why didn’t you tell me?” I asked looking at Ramon, still not at all getting the picture as to why he wouldn‘t have told me we‘d be meeting with two people versed in TBI.
“I didn't remember- forgot,” he said but not in my eyes, nope his eyes were exactly nowhere in my line of sight, looking down and away. Which of course I completely ignored because I figure- not so very deep down- I didn‘t want to see it.
“Oh, okay,” I said before staring to talk to Michelle again, and Mark. Ramon sat quietly eating his tacos.
How did I frame Ramon not telling me that I was about to meet two professionals versed in brain injury? What self-explanation did I provide for him “forgetting” that he was about introduce a TBI to two professionals versed in TBI?
“kind of sweet really, Ramon just thinking of Michelle as his friend and Mark as her husband… what they did isn’t who they were- . Nice really, just who they are not what they do...”
Yep. That’s how this idiot framed it.
The next day I got a text from Ramon asking if we could meet up, he wanted to get something to eat. A little odd since he was staying at Michelle and Mark’s, they drove BMW SUV and thus there was probably food available…Would I pick him up at the Chick Fillet across from Roper’s?
Yes, yes I could do that. We met up, Michelle dropping him off and still very smiley suggesting I come to the house when we were done. As Chick was closed and Ramon wanted pizza I took him to the best place in town: Andolini’s. He offered me a slice and we sat outside, though too close to a speaker really. He still seemed tense and depressed though I didn’t take it personally and was kind of amazed that of the two of us I was the lighter of spirit. He mentioned how Michelle didn’t really have any girlfriends and was in need of company. I asked about his dating life, job, etc. - it was all some form of bad. His students? Same thing. Nothing good at all in life to hear him tell it.
The first surprise: He had said as I drove him to Michelle’s that he was trying to get a job in the US, in Charleston or Atlanta “and you could live with me”. I told him the truth I’d be needing income adjusted housing - no way I could afford anything else. “But no, no you could live with me for free”. There was something in his voice I didn’t like. “Ramon we’re just friends that’s all it is, was and is ever gonna be,“ and man that felt familiar, this all felt too familiar. His head went down the same way it did in the restaurant like a child being caught, like when he said he’d forgotten that Mark and Michelle had both worked with TBI’s for years.
The second surprise came when I drove him back to Michelle and Mark’s - under half a mile from the Chick Fillet which explained the weird look he got on his face when Michelle had suggested I come over for dinner as she dropped him off. I’m still not entirely sure what that was all about but the only thing I can presume is that it was a security protocol: she’s been homeless do we really want her knowing where we live?
The next surprise Ramon left for upstairs to his room leaving Michelle and I to talk which we did and I got complimented a lot which was nice but I think should have alerted me to everything I wasn’t catching: that there were hidden agendas a foot.
We all had dinner together and for perhaps the rest of my life I’ll always be glad when anyone presents me with something other than: fried chicken, white rice and canned green beans. The volunteers’ favorite meals to serve. That and sugery sodas and baked desserts at ever meal- just what the homeless need: low nutrient, high fat, high sugar. I know it’s wrong but within a few weeks I was having huge cravings for fresh produce and when they volunteers would say “Lord Jesus , please let this food nourish their bodies..” I’d think well- yes, let a miracle occur.
It was past sunset when I said I had better head back to Mount Pleasant, Michelle and Ramon were still talking to me in the driveway as she asked what year my car was and commented on how good it still looked for a six year old car. Then Mark came from basement and though it made no sense I stood there in the driveway feeling surrounded.
Michelle said I could spend the night which seemed odd as I had a place to stay. She went on “you could sleep on the couch…ooorrrr you could sleep with Ramon in his room?” which seemed an odd thing to say. “No,” and I just wanted to bolt like a horse from the paddock. This had been the second time in a few hours that something…I stood in their drive and couldn’t quite process, what- the-hell- kind-of-impression are these people under-?
Then Michelle started talking about God and bringing people into our lives for a reason, you brain injured -we trained in brain injury and that’s when I should have known but like the idiot I am I started talking about two books: Saved by the Light and the one by a guy who’s been hit by lightening a couple of times.
“Danion Brinkey- I was just talking to him on the phone,” Mark said, standing there holding the phone which struck me; I can’t even say how, it just struck me.
Before I left Ramon said “Well- now you have people you can depend on in Charleston”.
“Thanks,” I said and gave him a hug goodbye. Many weeks later I struggled to wrap my mind around something: why would he have said that? Why would he have said that when now he’s saying “Michelle does that she drops out of people’s lives, she’s unreliable”. Why would he have presented her as the opposite? And why, why after she requested a letter from me granting her the authority to speak to housing officials and gain access to my records, why would she then not show up for two housing appointments Why would someone say “I’ll be your patient’s advocate, I’ll keep track of everything…” and then do the exact opposite?
Prior to all of which Michelle had driven me to lunch one day and went on a - well she was the only one talking and it started as “You know physical attraction- I mean I wasn’t physically attracted to Mark at first”. A long tale ensued and there was a point she kept referring back to, what her own therapist had told her , about Mark of course, “give yourself the opportunity to be loved by someone who can love you the way you need to be loved”. But every time it didn’t feel like she was talking about she and Mark, it felt like she was trying to introduce an idea I was resisting. So I typed a letter to Ramon making myself really clear yet again and this, this had happened in college too. It made me uncomfortable then but now, now twenty years later it pissed me off. I mean how many different ways does a female have to say no before its understood ?
So why even though I had changed my mailing address with the Housing Authority to the apartment I was and am now in and why after getting a letter from them confirming my address change for notifications from Michelle’s to my new address-Why are they mailing her my notices?
Why for over two months now has she refused to return the letter and/or acknowledge she is aware those powers were rescinded? Why would I get a notice late after she or Mark forwarded it? Why was I culled from the Housing Department’s wait list- oh because for some reason it went to Michelle and Mark, and for some reason I didn’t receive it until after the due date. Three weeks transit time in a town this small.
And now, now two months later: I’ve sent an informal note, I’ve left a phone message and sent a text and yet she won’t just write a note acknowledging that she is aware that she is not empowered to speak on behalf regarding housing issues. No reply even after I asked her to spare me the expense of sending a registered letter. Nope no reply, so a registered letter.
I n closing, this sort of thing is precisely why I don’t and never really did tell people what’s going on in my life because mostly it seems like all people do with that sort of information is 1) not believe me 2) find an angle so that they can a) find a new place and interesting place to twist a knife or b) enact their own personal bullshit.
So now I have more non narrative sequentials (not a word?- oh I’m making it one( “Abrahamic is/wasn‘t a when I typed it yet I‘m reading a book where its all over the place- and damn it I tagged it first)). So more non narrative sequentials to tackle with my brain that really, really doesn’t do that sort of thing well. Michelle had said she’d make me a color coded work book- but I’ve tried that before and the problem becomes the subsections- I always wind up with so many friggin subsections within a category.When I’d told him where I’d been living and about the TBI he hadn’t been curt and we even started exchanging conversation back and forth via a social network.
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