Several Moments Later as the clock ticks on my interent access...

and wordpress is slowly - and perhaps uploading my text? (Yes text- how retro, time consuming and beyond a hundred characters.

Wordpress may or may not ever upload this file - or simply take longer. I'll try it here as well and perhaps google and wordpress can argue later about who really- really owns my copy ( I say I do:)

Blog Title: Letters To: W.S. Merwin From: Purgatorio




Title: Love Letter too/to/two/2/:



Subtitle: The beginnings of my affair with a man I have never met who is either in his 90’s or quite possibly dead.



November 16th, 2012



Dear Merwin,



I have only just begun the journey and already I want to edit Dante. This want(ing) to tighten the verse began in your forward and therefore I put both yours and Dante’s book aside. Perceived as a mere dabbler, or merely for dabbling, should I really be heading toward your weighty waters?



It was just such a similar urge, as to edit Dante, that repeatedly echoed in me all evening, then into the night and mo(u)rning finds me writing. Thus Merwin I gratefully picked you up again tonight for you and Dante are the surer of my urges. The other urge- no the line kept and keeps returning as a message I thus far wont send as those waters are far more weighty than dabbling with or in Dante’s ink.



Being that in my last letter I mentioned that I may have fallen a bit in love with you I would understand your finding what will follow to perhaps be: inappropriate, crass &/or emotionally inconsiderate.



However as we have never met, you don’t know that I exist, plus you may be dead, and even if alive are in your nineties, and too being that you are a full continent and ocean away- only thus can I feel comfortable bringing the matter up with you, or anyone.



You Merwin because I became nervous about making a phone call, that I was about to make a phone call. I dialed the number three or four times and hung up, I hope, before it even rang.



I was as nervous as I was when I first sat down to write you Merwin. An emotional congruity, slight certainly but there. And too there was a clarity, the few hours I‘ve started to get here and there where “the machine“ that is my brain “is beginning to work again“. Within that clarity is and was simply what would hurt least? How can I most help, and even if not help - how to at the very least not hurt him when there is so much hurt on his plate right now? Right now when I just wish I could tell him a single sentence and it could just be what it is, saying /meaning only what it says.



I learned today that someone who was and simply remains dear and important to me, I learned his father died. I learned his father died very recently and I so wanted just to say “I’m sorry about your Dad”.



Problem is I shouldn’t call him generally. Thus calling him to send condolences is off the table, at least it should be. I wish I could- in that I wish I could be of comfort. Problem is I have to balance that against reality- the likely reality that hearing from me may simply upset him during a time of great losses and pain thus causing him more pain and me more pain because then I’ll just feel badly about having called to say I’m sorry your Dad died and I don’t want to be walking around feeling badly about something like that.



So that’s my present purgatorial hell.



Though eventually Merwin I did arrive at a rationalization. A rationalization I may eventually go with: an opportunity for him to be really clear and in that one last thing his father can give him…in a round about sort of way. It would be easier for me to live with the entirety of it all as well. Thus there’d be some symmetry, something positive even if delivered in and as a negative. It’s a final scene/act I could live with because obviously I found a place where “The End” is workable in my equation.



My wanting to contact him in his time of loss. I want to somehow ‘make it better’ like blowing on a cut after antiseptic. Problem is, last I heard: I’m salt. Either I’d be salt or he’s “been trapped under something heavy” to quote a writer named Nora Ephron.



Ned’s wife though, see I’ve been on a journey to make sure all things left unsaid get said/expressed/known. They were married so long and in long or particularly good pairings when one goes the other tends to follow them quite quickly. I never got to meet him, I doubt I’ll ever meet her and I wouldn’t want to upset her either but there was something I’ve wanted to thank her for and I don‘t know if that happened years ago. I don’t even know if its her or one of their daughters but I’ve always been so grateful for something one of those women did.



For the last six month s it felt so oddly similar to before Uncle Kenneth died but of course its not the same thing with the recently departed because - well for starters I never met him.



But like Kenneth there have been nudges and around them a feeling like the arrangement of open windows is/was about to change. That nudge accompanied by a whisper of something to do and I didn‘t. I thought : its posted on the internet, he knows- mission accomplished.



Problem is I didn’t and don’t know that.



Not 100%.



The whisper was sending the shorter and tighter version to Pensacola College care of a ma who taught physics. He could decide whether to pass it on or not.



Like Kenneth even though I felt this pull, my head and experience said no. Which isn’t necessarily a bad thing. Yet I’ve been wrestling with a single sentence for the last 6 hours or so which is how I’ve come back to writing you Merwin.



There’s nothing lyrical about the sentence: I’m sorry about your dad, that he died.



See purgatory is more than appropriate reading material for me at this point because there is someone I care about wherein perhaps the most caring thing I can do is NOT call and say I‘m sorry your Dad died.



So W.S I may dabble in editing Dante and hopefully fall a bit in love with both of you some more because I look at the storyline of all this, the timing and I just have to remember what Nora wrote - which applies to me most certainly: “desperately want to call but am/are trapped under something heavy”.



In nearing a close it seems only good form to quote you back to you though I believe ‘mo(u)rning star’ would work better but obviously I would. That optional spelling edit doesn’t change the fact that I found your sentence arresting: “And we are standing on a shore seeing the first light before dawn seep into the sky, and the morning star”. In reading that sentence I wonder(ed) if you yourself hadn’t wanted to insert an editorial carrot into Dante’s prose here and there. Whereas I want to rearrange the sentences a bit and occasionally make a red line.



And of course I always want to comma splice because commas aren’t always the literary comma but too are the musical variety of where to take a breath, or the comma of theatre wherein it is almost a beat and most certainly the rhythm.



I find it difficult not to splice, comma splice that is.



I must continue to resist the urge to splice- except in poetry where I think it might still be allowed.



Maybe you and Dante will guide me out from this particular canal of Styx. Or perhaps I’ll relent to the aforementioned rationalization and thus in all this perhaps one last gift a father can give his son.



Lastly, I’m sorry Merwin. I’ve been two-timing you while writing this letter because I haven‘t, except at rare points, been writing you and only you. I’m feeling very conflicted and I didn’t know who else and perhaps how else to say any of this.



Carefully,



M.C.A.

Right now at this moment

I saw a face on a screen that still can brings comfort and i feel safe somewhere inside which is mystery as to how that would be the case but it is. Hope he has one or more of those as well...and on that note I shall endevor begining an uploading of about 35 letters  and so again to the inckqblot at wordpress dot com.

On blogspot dot com I was sad to see that my editorial choices do not always register or work across different devices which is a total bummer.

A Year In Review...and some backstory

2.12.2013

I cried so hard after that scene in "The Artist" when the feather fell and there was that loud crash because that happens for me, that level of sound distortion and only a movie of near silence could communicate that.



2.9.2013




It was a very productive year.



How could I- I of all people make such a claim!?



For example: Today I unfolded two receipts and just before looking at them I realized: I will be momentarily disoriented, it will either be for a second or two OR if it is not confined to a short instant then I will need to a) consider not doing this now or b) know that if I do do this now it will take a lot more effort, I will be taxed a bit extra and I‘ll need to pay very close attention to what I am doing physically afterwards so as not hurt myself.



I was preparing to do look at receipts so as to check the math on my food stamp balance and the adjustment of text and layout differences reading and deciphering between them is both cognitively and visually difficult for me.



Anyway as weird as it sounds it really helps me psychologically to be starting to have a cause and effect map as well as plans for how to deal with them. Up until the last six months to a year all I could tell you was that it had something to do visuals and I’d feel ’weird’ all of a a sudden and by weird I mean disoriented and something like disassociated, ‘out of it’, somewhat confused and often a bit faint, like I might pass out as well as dizzy, my sense of equilibrium is impacted. I don’t know that there is a term for any of all that put together but I can tell you it is very frightening and has been happening over and over and over again all day everyday for the past nearly twelve years now.



For me I would experience these instances as random but now with careful attention and the calm yoga has helped me keep rather than feeling mildly hysterical constantly: what I know changes in the physical layout of visual information throws me- almost literally. Visual movement from cars, people, material on a piece of clothing can all throw off my balance- and it is not constant which means I‘ll be fine and then there‘s either a moment here and there or a constant deluge. Too, my eyes flit and dart out on their own accord. By which I mean: my eyes involuntary move in huge sweeps. One eye will just look in another direction and not in response to any stimulus but literally of its own accord which makes me totally dizzy.



I never know when any of this is coming-



except for today. I held two receipts in my hand and could know that in all liklihood I will feel momentarily disoriented to merge the data try. Knowing makes what may happen and what the triggers are much less scary.



12.29.2012



The other night before I went to sleep I was thinking about doors. How it took weeks to know which doors belonged to the bathroom, bedroom and closets in a small hallway. They all look the same - except for one that is smaller than the rest which I would have thought would’ve helped but as it was one of two closets in that space it took six months to know which was door opened into which closet before I opened it. I still occasionally screw that up but not too often.



Horrible.



So the other night it occurred to me how much easier it would have been if I just could have painted the doors and color coded them. And then realized the thing that I never thought of but was just lucky enough to see in a movie: labels. Next time I move I can label the doors. Just like they showed for labeling cabinets I can also apply that to doors.



What the first ten years would have been like -how much higher functioning I would have been by now with tips and help like that?



I suspect those years would have been substantially different and better. Two hours to unload a dishwasher- that was standard because I’d open a cupboard it would be the wrong cupboard or I’d forget if I had opened it or what was in there and therefore open it again… I spent so much time like that.



I vividly remember looking at a spoon, mentally attaching the word “spoon” to thing/object and the thought “ spoon. The spoon goes in the spoon slot.”



It was during that period I was rejected by HASCI, Head and Spinal Chord Injury. Of course they were at a disadvantage- as was I. South Carolina has very few neuropsychologist and the one I had- I suspect there aren’t many states where he could practice and keep his license for long- or perhaps practice at all.



The interview with HASCI went the same way, structurally, as with the incomp.: a series of rapid yes and no questions. Opposites, in word relationships, were and often still are a problem for me: saying cold when I mean hot, up when I mean down. Front when I meant back that actually occurred within ten minutes of the crash as if whatever circuits play a role or governs that cognitive and linguistic function showed up that early.



During those interviews, the idiot neuropsych and later HASCI - before each interview I advised both of the incompetent neuropsychologist and the HASCI interviewer of what I knew, about this quirk. I was then asked a series of yes and no questions. Neither altered how they administered the questions- didn’t wait and confirm- just did business as usual and at various points I’d want to say “wait - can we go back -that’s not what I-” but they’d already moved on.



It was awful.



That’s why I’ve been working diligently for about 8 years now to get my writing back up to understandable: I can’t rely on speech because it takes me so long to work things out. I can fake it- but as soon as the situation calls for task based communication: I beyond flounder and am generally completely ineffective.



Input-output speech therapy had been prescribed but by then my COBRA ran out- there‘s such a long trail of really poor medical care- just clueless and if not clueless quickly absent.



One quickly absent doctor recommended a local charity that helps pay for healthcare but I couldn’t fill out the form correctly. When asked them for help filling out the form their rep became frustrated finally shouting “It’s a simple form!“ and hanging up on me. I never asked my neighbors for that help. I was so embarrassed by how difficult “simple” things had become.



The HASCI interview was the worst because, in part, I didn’t understand what was going on. That’s still a problem- things take me longer though its only within the last year that I’ve understood what went SO wrong with my HASCI interview.



See I was raised (and now I actually remember) - it was very strongly instilled that when you’re having company everything must be clean and tidy and presentable - no matter what: keep up appearances. So I bought paper plates, plastic utensils and made sure I wasn’t cooking because then I would have had to keep up with dishes AND make sure things were tidy and vacuumed. I may have even boarded the dog because it was be a very important appointment and I knew that and I needed help so I made sure the house was a clean and tidy as possible for HASCI. Which of course makes no sense- which was actually the worst thing I could have done. So everything looked better than it was, appearances.



Again I say and contradict medical advice I got: it will serve no purpose to remember just let the amnesia be there. The thing is if I hadn’t worked to get my memory back I wouldn’t really understand why I had done that because its so extremely illogical in a lot of ways.



I’m playing HASCI’s advocate which I usually don’t but I can see how that went the way it went - though their rep is making sure as few people get help as possible. So we’ll see if the second time is the charm? The policy of South Carolina seems to be to make sure the disabled have as difficult an experience as can possibly be made for them. Walking into College of Charleston’s new stadium made that abundantly clear.



But none of that’s what I was going to write. What I was going to write is what I’ve learned about my new neurology package this last year. I say “new” but the fact is I’ve had this new and being remodeled neurology for eleven years now.



After a major neurological incident, a devastating long term one- you don’t get a list of what you’ll be experiencing or what to do if this is happening or that or - and that’s the thing occupational therapy. There are two kinds: the work of life skills and work you get paid for. I needed, and still need, the sort of thing a qualified occupational therapist provides: label all the doors, all the cupboards, all the drawers so you’ll know because you don’t remember.



That sort of help would have been and still would be helpful. Instead - well first you have to identify what’s going on and that probably sounds easy but its not. For instance: what goes on that makes me so dizzy I clench(ed) every muscle so as to stay upright? What’s happening when that occurs?



Some of things I’ve been able to identify as room spinners:

1) If I move my eyes too fast (They dart out a lot- aren’t under my control. Sometimes its just small darts like if I’m trying to read and my eyes go back 3 or 4 words or to another part of the page. The big, not of my own volition darts, are the ones that send the room spinning)



2) Movement. It’s not all the time, every day certainly -but not all the time but when a car goes by or even swirl of material on a someone in my sightline and some days just the motion any motion in my line as I stand at the sink doing dishes. So I close my eyes and if I don’t see the rag in motion or anything- its better. The dizziness gets better if I close my eyes. The sinks the best place for that to happen because then there’s something to grab onto. Its not all the time which means I never know when its going to hit.



3) The visual problem in part seems to be rooted in contrast. Some days with paper are the same thing with sound: where its too bright- the white or beige or whatever against dark print. Some days I literally can not read without it being huge levels of work that actually hurts from the effort because the whiteness of the page drowns out the black of the type and I have to concentrate so hard to make myself figure out what it says.



I feel, and plan on experimenting using grey paper- although custom paper even darker grey than what they sell at Staples would probably be best but I too wonder if the colors are close enough like with different hardness pencils if that would help because it seems to be contrast issue.



4) The mail system continues to look weird and retarded and it also helps me to do something I hadn’t been able to manage in a decade: mail. My power was ever getting turned off for years and not because I didn’t have money to pay for it because I couldn’t remember and then I wouldn’t be able to find it and then I’d forget generally and then my power would be off but everyone else’s would be on?



5) Had a very weird experience but what comes down to it this: I Used to go to Costco regularly- for years and I could drive you there. Problem is, which I hadn’t known about until some man the bus said “The bus to Costco” one day and days later it still bugged me that he said it.



What bugged me about it? I hadn’t put together that the same street I go by on the bus is the same street I drove into with my car.



!?



Same thing happened on the route to the library. My maps, my physical maps don’t integrate. It’s like I have two cities in my head (of the same city) and the information has been and is completely separate which is maybe part of the reason why I have been, and continue to be “challenged” by something as simple as learning bus routes.



Finally yesterday someone, a bus driver (thank you Martha) - told me about Teleride and that I can apply for it- though whether I’ll be able to afford it or not is another matter.



6) The rug that I couldn’t see the patterns all these years I occasionally can now. For years: chaos. It’s something about visual pattern recognition which it occurred to me today might be a contributory factor when reading is hard-impossible. That it might not be just the overly bright factor but that the pattern recognition part of my brain is offline?



7) I don’t know if it’s the right word or not but I think depth of field? Being able to make whats close to you clear and the point of focus and shift to points further out? (I think the Hansel and Gretel-ing might help with that- of course that probably wouldn’t possible if it hadn’t have been for a crab apple tree branch, some drops on it and me not walking straight into it or having to dodge it at the last millisecond because of a p- word that’s about knowing where your body is space- or not. I wonder if that’s really an inability to properly gauge depth of field/focus/perception?



8) And then of course there are the people who find all of this very funny. Or can’t understand how a person can write can get daily confused about super simple stuff. And too there are those who have, will and do view me as prey because I have disability- a couple of them.



The worst of course continues to be what sounds to many a folk like petit-mal seizures.



I continue to take the best medical advice I’ve gotten in ten years: find a new tipping point. Neurologically every one has a threshold and unfortunately mine’s pretty low but the idea is that in time if I can better learn my triggers, figure out coping strategies and I will be in a position to not only do better but more.



9) And very slowly seems to be the key- going as slow as I need go. Oh and so did not get the level of physical therapy I needed.



Prior to the ‘one too many head traumas’, I had been more gifted than I knew. I had hoped my last year or two here, for that was the plan: finish college without losing any credit hours, spend a year in a few internships readying for the GRE and letting my undergrad ‘gel’ by developing and hopefully introducing a media literacy program school kids.



Why?





I never got to put all that together: the grant writing of Art Management and Communications: speech and technical writing- as well as a little history and media criticism. Ten years later everyone is carrying around their media device everywhere they go and I doubt questioning their content at all- though the content really likes questioning us.



Lastly if you know or ever know anyone who has a brain injury either direct them here or read the content and gleen what you can for them.



Too, its recommended for TBI’s that they be where they’re familiar with their surrounding- where they grew up or places they’ve lived before. I would add, if you’re lucky enough to have an advocate, inventory those places particularly their records per people with disabilities and quite frankly how high their state SAT scores are and what tier their medical schools are on.



TBI’s try to keep up, have their old pace. They’re apparently known for having trouble measuring time which I believe is because the clock in us, of how long it takes to do this or that has changed. Everything takes longer and it makes judging time extremely difficult. I kept trying to do what I couldn’t faster than I could and I know at this point that had a horrible impact on ability to recover and ultimately function - so now I get used to walking so slow it looks ridiculous but it’s the only pace I can go and not hurt myself. So I look like a spectacle BUT I can walk better and not be as dizzy. I don’t have to concentrate as hard on moving my legs.



Too I’ve been using media as a rehab tool: try getting content that either is music or has music you’re very familiar with in its content and slow it down to half speed. I believe joggling the music center of the brain can be highly useful broadening pre-existing neurological branching.



Also if you/the TBI have information about or know anyone who can tell you what books or authors you’ve read in the past get those books in audio form - even if you can’t follow them and are constantly rewinding and having to go back or can’t stand sound very long- try it. Past branches can make new neurological branches particularly if done strategically and on an individual tailored basis at least that’s my hypothesis. Considering I’m the only person providing me with any modality to try so as to get back what I lost…



I hope on the other hand other TBIs have the help I didn’t and still don’t- but still hope for.



11) I’ve noticed I have a weird disparity between two areas of verbal communication (therapy it was recommended I get but never could)



a) interpersonal casual banter I can do somewhat well most of the time



b) task or goal oriented communication on the other hand is like talking to another person. The aphasia shows up in full force, rhythm glitches, mind totally blanking- yet if I switch back to interpersonal the aphasia lessens and I can communicate more clearly, markedly to the point it is actually quite weird. I think whatever part of the brain is involved in each one part’s way stringer than the other- probably It’s frightening - being in not able to speak at all again. The word repeats, the stuttering the spacey pause - it all shows up again sometimes, too often.



Could have something to do with shared communication as opposed to task which is largely self propelled?



12) over-salivation was the major discovery of the year.



13) as has been that the upper part of my body and my lower body from about mid- rib down have essentially been, and still are, on different schedules.



(Per movement- cars, clothes people, etc- I realize that IS just like when I got the BIAA’s home recovery program. I didn’t get far because the first exercise was essentially playing the card game “go Fish” which was just the worst- the movement , th evisual of flipping the card -seeing that