Read on Twitter
The path I've had has failed. Simply from an organism view, the corneal neuralgia I have post LASIK surgery - the constant distraction, sensitization, hyperalgesia - has disabled me from higher executive function, of moving forward in life - and no one adequately supports me.
I'd remove my right eye if any doctor had even suggested it, none have. I can only assume removing main source of pain would remove dysfunction. Was it not suggested because it wouldn't work or none have taken my level of pain seriously - being dead is better than eye removal?
There's just no point to keep trying to share my story in hopes someone will start to help: talking doesn't help, I need actual help in real life, in-person, I need help to combat executive dysfunction that gets me stuck when always on my own, I need company to combat loneliness.
People don't understand how executive dysfunction of my level manifests. Self-directing through decisions is very difficult, the more steps or complexity the more impossible - why I have to try to maintain routine to not cause immense frustration nor being too active to ...
... prevent cascading of bad coping mechanisms, meanwhile having to fight boredom, loneliness, restlessness, lack of reward from lack of productivity, and more - while trying to distract myself from the eye pain and dysfunction while in dysfunction.
I've asked many people over the years to help - if anyone tries it is for very small, one time things. I tried to get OHIP covered help, they were more than incompetent - not able to summarize even from their notes what was discussed, 80% of details were wrong in the email ...
... summary of the meeting that they were required to send me afterward as part of their work. They weren't willing to even make phone calls that I felt too stressed from making to find out something simple for me - so would have been pointless anyway, unless that was their ...
... own personal limitation. They claimed there was no one else available to come to me weekly, so I just stopped struggling to make something happen/execute down that route. Can only try so many times, for so many years. It would be hard for me to even direct someone if they ...
... were willing to help - let alone if it was trying to manage or depend on many people who do little each, irregularly, which wouldn't be conducive to a less stressful flow state. I'm only writing this because I haven't opened my right eye yet so I haven't triggered the ...
... the full pain yet, so the referring pain/sensitization amping up/overwhelming my nervous system and further disrupting my thinking is slower but still happening - I can't just keep my right eye shut, it still worsens just at a slower pace. I really don't know what to say ...
... or share anymore. I've written this out similarly many times, explained it as best I can to doctors - where NONE of them have cared to actually read what I write, they want to hear it verbally - and don't care to accommodate reading whatever I've been able to write long form.
That limits the resolution, how well they can understand the situation - convenient to fit within their limited scope of view and indoctrination into whatever generalized or specific scope of education they have. I also however can't properly keep track and organize or manage ...
... - or remember for reference - what I've written before, to then be like "oh I need to share X with them." That's part of executive function and so unless I have stuff right in front of me - recency and primed, a reminder - the pain basically keeps it out of my mind otherwise.
It's why I'm also basically forced into a limited routine, of just "going with the flow" of whatever my routine of 4-5 sites I visit throughout the day to try to distract myself may lead to; comments I may reply to, videos I may watch. But then I can't organize to move ...
... projects forward, or to find and manage friends or other relationships, or to find and direct others to help. I've fantasized of potential circumstances that maybe could allow me to have enough regular company, people who I could share what needs to happen next with my ...
... projects - where enough could get done, where I could be in relation to others enough, where I could get enough comfort and feel like there was productivity and therefore reward in my life: but I have no core person to help facilitate that or find that core person to help ...
... me get to that point, to even try to see if it's possible. Unfortunately my mother and sister have't been useful except for very simple things, and grateful for the financial support of my mother - I would have been dead 4+ years ago otherwise - otherwise she is too ...
... and my sister isn't capable of filling that role.
So even though this is cathartic to write, it gets boring, repetitive and nothing changes after each time I write something similar - and no one will see it, or no action will be taken to help - even if I have some money ...
So even though this is cathartic to write, it gets boring, repetitive and nothing changes after each time I write something similar - and no one will see it, or no action will be taken to help - even if I have some money ...
... to try to hire or pay people; that too adds stress, pressure, on myself and my family but if needing to pay at least lets me try then better than being dead; and idea of payment for an unknown person, that stress added is heavy due to how overwhelmed/stressed I am already ...
... from the pain, so there's an aversion to even trying that I'd have to fight too - which constantly tries to pushing me into giving up, which is my current stance. If I had "unlimited" funds to allow for waste of hiring people indifferently until finding a workable ...
... situation, scenario, then I'd do that without stress added - but I have constraints, including my mother needing to retire, her having already gone into her retirement savings to pay for some of my stem cell treatments that I've been getting to reduce pains in my body ...
... that the central sensitization/hyperalgesia caused by the eye pain amplified in my body, providing significant permanent reduction in pain from my body - but not reducing the eye pain, its dysfunction, nor allowing my quality of life to improve significantly.
So what do I do? Stay in this insanity trying the same thing over and over again, reaching out to people with no new level of adequate help or attention. I only have so much mental energy each day that's difficult to direct myself to any specific task, cycling through ...
... to burn out each day, in perpetual burn out - like a pain version of Groundhog Day movie - waking up into this same redundant daily life. And I only gain moments of motivation rarely these days, which may get me into a positive mood for hours each day, but doesn't improve ...
.. my function much if at all - time may just seem to pass faster at least for part of the day.
I don't know what to do, and I will be able to show this to 100s of people - and no one will help either, doctor or otherwise.
I don't know what to do, and I will be able to show this to 100s of people - and no one will help either, doctor or otherwise.
People won't read to understand my constraints, they won't use critical thinking to understand the scope, and they'll stay within whatever professional obligation and specialization they have - and not actually do any of the work necessary, and then with long wait times ...
... where inevitably due to the 99.99% of incompetence I've encountered, that is what I am waiting for. It makes no sense for me to continue, no one except my family wants me here, everyone else loves my ideas for my projects, the insight I have from this experience, but I'm ...
... not staying around for other people's excitement or entertainment. And I can't implement and execute on a system that shares my story to each person who may find to help to read, understand my circumstances first - and it doesn't seem there's anyone who will do that for me?
I'm trapped in this fucked up limbo space where I can fully understand, I can reason and story tell - I know up to $100mm is needed to turn stromal stem cell research at University of Pittsburgh to heal/regenerate corneal tissue (eyes) into an FDA approved treatment, ...
... to fund human clinical trials, taking their research that gad positive data/results with mice/rats to heal/regenerate deeper corneal tissues.
Then I have other "normal" life stresses - aside from having no income, nor disability/social assistance which wouldn't cover ...
Then I have other "normal" life stresses - aside from having no income, nor disability/social assistance which wouldn't cover ...
... anywhere near my cost of living - like bullshit from my current landlord, previously like a bad actor lawyer/company trying to steal a domain name from me - all that is extremely stressful and not avoidable.
And then when I do meet new people, I see their lives moving ...
And then when I do meet new people, I see their lives moving ...
... lives moving forward, their projects moving forward, them being successful and able to do their project's day-to-day tasks or fundraise money they need or or or. Anyway, recently told this type of sharing is a "pity party" - my life is pathetic though, and the pain ...
... and suffering is a daily, constant experience - that reasonably and understandably people don't want to constantly hear about, and maybe they wouldn't if I have enough, adequate supports to help me move my life forward, to help me move my projects forward to give my life ...
... meaning and something other than the pain and difficulty to talk about, something else to focus on to distract myself from the pain than just the boring shit routine to Twitter, Reddit, HN, Techmeme, Techcrunch, Twitch, YouTube that I cycle through.
another day
another day - orange fog, opiates stopped
another day
Another Day
Another Day
another day
another day
another day - no processes, executive function wise, can make it past my right eye for long because of the eye pain - they are blocked from the pain, unable to flow. only daily certainty is uncertainty, no regularity to my life. .5mg dopamine seems to help, .5mg 2x daily ...
... likely would help significantly if 1) I could find doctor who would prescribe it, 2) if I could afford the $50 daily it would cost, 3) while still having to maintain discipline with eating and keeping activity level very low. I'm writing this with my right eye shut, left ...
... eye open, the prickling, scratchy, foreign object feeling already built up and distracted me enough only being open ~30 mins now to unground me, where can't be connected to my body, and mental energy related flow however it wants/is meant to interact with body is broken up.
The same is happening with my right eye, even though I haven't even opened it yet, just at slower pace until I open it - and then my executive function, and being able to follow and guide my thoughts for what I want to even write stream of consciousness wise will become more ...
... and more difficult, more and more stressful and overwhelming and mentally tiring. Most people once mentally tired get to rest, settle back into their body not in pain - still with mental energy, not exhausted like I end up being. It will be a miracle if I survive this.
