#because it can get out of control and begin to shut down my autonomic nervous system and i end up presenting like a stroke | Explore Tumblr Posts and Blogs

mattamyers · 4 years

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My long journey of healing has continued

It’s been years since my last blog post. I’ve decided I will start to post a log of my days, when my mental energy allows, when I feel well or positive or organized enough to do so. I’m not sure how this practice will evolve, however I’m wanting to actively start sharing my story, where I’m at, so people can start to get to know me - and what my days are like, how my life is hopefully evolving, moving forward - as well as the difficulties I face daily. What’s changed most recently is that the last stem cell treatment I did in the Cayman Islands has improved my executive function and recovery time from activity more, where posting regularly of longer form text seems like a possibility now - at least in this fairly stream of consciousness, limited organizational executive function way. Unfortunately the post-LASIK eye pain (corneal neuralgia) has proved itself to be the mainstay of pain, causing the majority of the executive function disruption, dysfunction. Yes, I struggle dealing with a varying degree of severity of being suicidal. No, once I decide I can’t do this anymore then I will not be letting anyone know - I have already tried multiple times to get help in our healthcare system, to which I was exposed to what in the future will be considered barbaric care provided due to a number of factors, however heavily due to indoctrination and a lack of multidisciplinary understanding and care; as which as I hopefully am able to share, you will see highlighted in my multiyear effort to help save Taylor, a friend, save her from from the broken system and from herself and her coping mechanism, who is trapped in it due to the funnel toward hospitalization and under care of the non-multidisciplinary care of psychiatric doctors - where that profession somehow has been allowed to capture and have a monopoly on a person’s care even if physical symptoms play a primary role in their dis-ease; the system having allowed her dis-ease progression to continue over years - most recently seeing how inadequate and arguably negligent care provided by not only doctors who are in control of her during hospitalization but also by legal aid that was provided her.

I’m not inherently broken, I’m not clinically depressed. As I’ve healed myself further and follow holistic health practices I’ve strengthened my nervous system, and unfortunately that has only had the affect of allowing me to feel pain more clearly, sharply - in higher definition, resolution. I can still smile, have a conversation - story tell and reason. What’s difficult for people to understand is how the constant, strong pain that refers from my eyes (primarily right eye) affects and sensitizes my nervous system - how that is a constant battle that exhausts me mentally and causes my executive function to be greatly impaired as well - increasingly so with added stress, physical or emotional - and tied to that the more potential emotion or stress tied into a decision, with more complex decisions being worse or having a stronger aversion, the more difficult it is to move forward - to get past the pain. Most of my days, weeks, are full of frustrations, exhaustion, of reminders of where I am at and what my life is like - how stagnant it is. I do my best to be on a positive line of thought, to having and being able to hold onto hope - for my projects and toward finding a solution that may help me tolerate the eye pain by reducing it further.

If I can successfully rally my designer friends to be able to help focus me and to help move the presentation forward for my greater plans, my vision for a health-wellness differentiated ecosystem - and ultimately towards building a city to compete with the status quo - their help to develop and refine the plan, then they may give me enough hope to keep fighting through the eye pain until hopefully research finds a solution to heal it with stem cells, regenerative medicine.

January 29, 2020

8:35am

I’ve parked myself now at Balzac’s Ryerson. I took the bus and had three nice interactions on the way. The first was letting someone who was running for the bus and about to get an an almost crammed bus, that another bus was right behind. He thanked me and made sure I got on first. At the next stop a man was at the back doors which I was sitting behind, however no one was getting out - I tried to push the bars to open the door but the green lights weren’t on since the stop wasn’t requested. He thanked me, smiling as he walked towards me from the front. The final interaction was the man sitting next to me, who turned out to one a first year student at Ryerson in Urban and Regional Planning. He was reading a book by Jane Jacobs, which I asked if it was worth reading. I told him first that after high school I first went to Ryerson, in his current program, though filtered myself out after first year due to not seeing myself having that career for the next 40+ years; irony perhaps that all along I was developing necessary skills, knowledge, and experience toward creating my New City and New City model. Everyone else on the bus was relatively asleep, unengaged, unsocial.

8:50am

I hadn’t used my laptop much yesterday, except a little before bed and the screen at a distance - less than 5 minutes really. Today I’m already feeling the eye pain increasing significantly compared to what I felt anytime yesterday, and how much it’s distracting my thinking, mental organization.

9:05am

Since my last stem cell treatment in the Cayman Islands significantly healing in particular my cervical and lumbar spine, I can be more mobile and the pain is reduced enough where if I don’t completely overdo it, I can have some level of executive function to manage myself. However now I am able to experience this contrast of more mobility - which keeps me away from my laptop screen - with how strongly my laptop screen triggers the burning sensation, pain of my eyes (most noticeably my right eye) and its cascading symptoms of headache and fascial tension increasing in my body. My focusing ability is decreasing from where I started before being in front of my screen, however how far it will degrade compared to before, I am still getting used to - however I can feel a building mental exhaustion as I’m having to counter, push against the aversion caused by the increase of pain triggered by the laptop screen light.

9:21am

My right eye more easily wants to shut too, an autonomous guard mechanism to protect itself, compared to yesterday throughout most of the day.

9:50am

I have been wanting to focus on, direct my attention, to finishing - so I can conclude my attention - the past week, especially the last few days, of a very heavily emotional and stressful event where I’ve been trying my best to help save a close friend I’ve known for a few years - to save her from herself, and from our healthcare system that has been adequate and negligent in her care - and is currently hospitalized, again, where he disease progression has been able to worsen because of specific, narrow scope of psychiatric care ignoring the importance of body health — in Taylor’s case needing proper treatment - a safe container, environment - to treat gut, sensory disorder (hypersensitivity; autistic characteristic), and for

“The lesser of two evils” - sharing Taylor’s story from my observations vs. being afraid and not exposing the system with an actual real person, case study to reference in high detail from a narrow and holistic view - while respecting privacy and not exposing any identifiable details that only doctors or other people Taylor shared with could would be the “lesser of two evils” as Taylor likes to say; and hopefully everyone has the integrity and rigor to not share what they shouldn’t, particularly if bound by privacy laws.

10:28am

As the body pain, from walking the amount I have today - from house to closest TTC bus stop, from destination stop to cafe, and around cafe a bit to purchase tea, water refills, and bathroom break(s) - has been calming, desensitizing, localizing - I’m more clearly able to feel the tension and soreness referring from my right eye, down through my right ear, down back of my neck on right side, and so on. When I close my eyes, right eye in particular, the desensitizing, localization can start to unwind relatively quickly before compared to the Cayman Islands treatment - however the discomfort is still quite distracting. I am curious — and afraid to go to acupuncture again, which I went too a short bit before going to the Caymans - not having done acupuncture for at least 2 years — to see how strongly acupuncture now will clear as it does, and how strongly it leaves me specifically and clearly feeling the right eye pain as an intense burning, searing sensation - which last time lasted for 8 hours or so, that sensation only diminishing as my body re-sensitized and therefore masked out the perception of the eye pain; it makes me wonder if others who have done LASIK, if they had clearly flowing, non-stagnant energy to begin or even if doing acupuncture for long enough to open their energy flows up - would experience post-LASIK symptoms differently, more clearly than before opening their body up; similarly regarding Ayahuasca ceremonies, marijuana use, or other psychedelics.

I believe more now too that since the neck and jaw pain has been healed more - reducing the masking, allowing me to more clearly feel what’s going on in these sensitization vs. localization flows/cycles due to pain - that the right eye pain’s referring pain sensitizes (makes hypersensitive) the tissue on the right side of my jaw increases, the soreness, and pain increases - even with limited to no use from chewing food (I haven’t eaten yet today). The sensitization of my teeth seems more clear now too, which at the moment I can feel much more than when I first woke up this morning - in line with the jaw pain increasing too.

11am

I just stepped away to the bathroom to go pee. As I was sitting — something I’ve been doing for a long while because for a long time was too difficult to relax enough to pee standing, my body didn’t trust standing if more relaxed — I closed my eyes and let myself relax as much as I could. During this time I could start feeling muscles in my jaw and face on the right side fluttering, spasming some. I hadn’t felt the jaw muscles spasms, fluttering before, only muscles around and closer to my right eye that I could feel where that’d happen — something I haven’t actually written much about or maybe not even at all; it’s the muscles being able to start relaxing but still not quite able to, with the reduced constant pain of my eye being closed for that short period after sensitization.

I’m able to more easily notice, along side with the pattern cascading from the right eye pain when I open my eyes each morning, when sitting and trying to be in a more relaxed state, in slouching posture and using back of chair to rest again — that my neck still wants to go into a more back and to a right position — something that before I couldn’t as easily allow, because perhaps the guard mechanism pattern was pulling my neck back too strongly, from there being too much pain being referred; it’s possible that that guard mechanism is triggered, such as that if say a “present moment” injury to the eye was occurring — a good, natural quick, rapid action reflex, would be to pull your head back and away; it was only in the last few months that I started theorizing that, and now that I’ve continued to have substantial neck pain from injuries healed - I wonder 1 )how much is still due to remaining injury, 2) how much is due to old patterns that need time to trust the neck and surrounding tissues are safe (as they dance and slowly heal with physiotherapy etc), and 3) how much of that reflex is caused by the referring pain from my right eye?

12:22pm

I can feel that I’m still reconnecting to and slowly processing stress from the last week, the last few days. It’s good, very good that my body can start to processing things emotionally more easily again since last treatment even with a relatively higher amount of physical activity compared to before — but unfortunately still what that means — as to the reason why there was such resistance, difficult, aversion to emotion processing before — that I’m grounding, grinding into my body - with the friction of the aversion to remaining pain — and where the post-LASIK eye pain is still the primary contributor; I do wonder and theorize that there is an abnormal inflammatory response (perhaps EDS related or that causes similar symptoms of EDS) - whether in brain and/or body - that leads to a central sensitization affect [effect?] to cascade so strongly, and therefore that many people who has done LASIK don’t have the same level of severe symptoms.

1:06pm

Taylor just texted me again. I responded saying I didn’t need the fork and plastic container her mother took home to finish the food I brought Taylor to dine with her in the hospital on some quality food that would be safe for her - steak and kale, to get high calorie and nutrient dense food in her, in with what little she eats due to an aversion from years long untreated gut pain and nausea; I said I don’t care to spend the time, energy, or money to go to her mother’s to pick it up, and to take care.

Taylor continued to reply in her usual way which I won’t outline here. She communicates often by referencing songs for how she feels that she believes relates to the current situation. I took that opportunity to then respond in equal by saying the song that came to me was In the Arms of the Angel Sarah McLachlan - https://www.youtube.com/watch?v=3pvf_OBuJVE - as well as to notify her I was blocking her phone number again, and that she can email me if she wants - however that I don’t know how often I will check it; long ago I started having to block her phone number at different points, and redirect her emails to automatically archive - so I don’t see them unless I search for her email, in order to protect myself from being triggered or pulled into what can emails or texts as bombardments to well-thought out pleads that she needs help - intelligent, and eloquent, and an expert seductress as one of her coping mechanisms to bring in various qualities of support, company, as a means to distract herself; always as her most desperate, in her darkest hours, has she consciously and even once subconsciously (where her ego mind boundaries and controls for respecting someone else’ wishes to not contact me through phone directly getting superseded by a short-circuiting of sorts due to how degraded, ungrounded, destabilized her thinking has become — reached out to me again with a different phone number; this has happened 6+ times over the last 2+ years — where I learn more, understand her patterns, and how deeply the inadequate care goes with her recurring hospitalizations into psychiatric care over these years as well.

To be fair, it only feels right to share: my voluntarily hospitalization December 2017 is when I first met her in hospital. I had been struggling for over a year at that point with debilitating pain that severely fucked up my executive function. My decision making, mental organization, emotional processing — and in general anything related to thinking about moving forward — the planning triggering a slight stress as a preparation into the body readying to actually move, causing an aversion due to even thought about moving forward/organization of future — was extremely difficult. The only coping that worked was greatly limiting my activity every day, reducing any possible irritants from diet as much as possible, and usually I’d keep my right eye closed for up to hours every morning after waking up to slow how quickly the post-LASIK eye pain would ramp up and sensitize the rest of my body and its pain, making it hypersensitive to pain. That day in 2017 I knew if I had gone home I would have taken my life, having desperately struggled for around a year by that point to find support to help me with tasks - with organizing, planning — for basic things as well as for finding somewhere to do more stem cell treatments (longer story I won’t share now), with more complex tasks with more steps being more difficult, a stronger aversion, towards acting including on how much emotion would be surrounding or behind the decision or action that needed to be taken.

1:33pm

I’m sitting by the door at Balzac’s - was only window seat available when I arrived. I just got a chill that reminded me that a few nights ago while laying in bed ready to fall asleep, my whole body - both right and left side together, shook in a wave as my body reacted to warm up a bit; I had never experienced or perceived that feeling before, at least not that clearly or in such high definition.

1:40pm

I finally checked a voicemail someone left. It was an automated call to confirm — a 2nd time — for an endocrinology appointment I have coming up to test my hormone levels; another long story to outline the stupidity of understanding this may be a cause to the fatigue I experience or then towards actual diagnosis.

2:04pm

I just went pee again. Relaxed sitting position, closed my eyes, the face muscle fluttering started again. I tried this time instead to do some alternate nostril-breathing (with thumb/pinky to physically block each nostril) to see if it would help - and it did seem to help whatever energy was struggling to flow, to pass, to flow; https://www.healthline.com/health/alternate-nostril-breathing

The amplified symptoms I’ve experienced has lead me to re-realize that the body relaxing more easily while having the eyes closed is natural, a mechanism whereby once your eyes are open — tense your body and fascia for movement, and presumably when your eyes are closed, start to relax your fascia — which at length is during sleep, when you want your body and tissues to be as open as possible for best blood and other fluid flow to be as unrestricted as possible; inflammation is linked to Alzheimers-Dementia as channels in brain that want to open during sleep to clear toxins, waste, efficiently — can’t, it’s easy to conclude that similar dis-ease can progress in the body for rest of the tissues in brain, and where dis-ease state could progress quickly if an overall unhealthy system is already at its tolerance of regenerating, regulating immune system for clearing the body of cancer, etc.

January 30, 2020

Summary of yesterday:

I am roughly transcribing this from an audio recording I made before getting out of bed. I’ve done that a lot over this last year, it’s allowed me to share without getting out of bed agitating the pain, without opening my right eye or having my left eye open much except for initially recording. A friend awhile ago suggested setting up voice activated recording - I just haven’t been able to focus enough, direct myself to that task, with everything else going on; it would help but obviously I do need to open both my eyes at some point during the day anyway, and even if I don’t open them, if I become active with thinking just the movement of my eyes with my eyelids closed increasingly agitates and increases the pain from the eyes anyway.

All I want to finish with saying is to say that what Taylor is going through, it exposes many things that are wrong with our system. I won’t begin to go into the detail here, however I have written much and will continue to clarify and evolve my understanding, write the story, in hopes of saving Taylor and anyone else who is hurt more and left suffering longer by the system; the doctor kept her hospitalized, was forcing a tribunal on her where he’d present a case to force medication on her she doesn’t want (meanwhile after multiple hospitalizations over the years they still ignore and don’t treat her gut pain, nausea - nor care to understand its consequences - nor are they or do they provide safe food for her, nor do they manage and control to only provide food that is part of helping stabilize her). The largest failure is that somehow the field of psychiatry has been given a monopoly on care when mental health is involved - allowing non-multidisciplinary care to continue.

I will leave you with a video to show the new hope coming for all in the near future, that Presidential candidate Andrew Yang tweeted - saying it was the greatest video he’s ever seen: https://twitter.com/AndrewYang/status/1222736120930295808

https://www.youtube.com/watch?v=h7crf0mzhws

10:22am

I finally got frustrated enough to return a phone call to book an echocardiogram. It seemed now that the pain is lower, allowing the frustration to build was easier — and then I could turn that into action much easier than prior to the Cayman Islands treatment. Making this call was a relatively low stress, unloaded decision toward action - compared to say the reason behind and how loaded making an appointment requiring a trip to an eye specialist, researcher in Boston, who I was recommended to make an appointment with - that has a lot of weight, resistance behind it - which I won’t go into reasoning for, having stopped me so far from booking an appointment with him.

Why I need an echocardiogram is part of determining a possible diagnosis of EDS — “Ehlers-Danlos syndrome (EDS) is a disease that weakens the connective tissues of your body. These are things like tendons and ligaments that hold parts of your body together. EDS can make your joints loose and your skin thin and easily bruised. It also can weaken blood vessels and organs.” It seems I have enough symptoms that it’s possible I do. There were two people that suggested it — a person online I briefly messaged with, and then one of the doctors at the stem cell clinics — whereby they were trying to help me problem solve why I report a much higher pain for tissue damage, some of which they can see in imaging, however that I report more highly than they’d expect. I will eventually write in detail about this.

I just realized, as part of an experiment, that reading along while I type helps keep my mind focused, on track, for what I’m writing about — noticing that trying to think to allow fluid flow of thought to continue if not looking could work — simply trying to remember what I just said in order to continue typing without looking — is at least impossible for me at this point, maybe a skill that can be developed or not; it wouldn’t be a useful skill unless someone like me was trying to problem solve how to find ways to reduce the issues related to the post-LASIK pain, some of which I theorize in part has to do — gets triggered more with use of the eyes, the surface and tension changes of the eye has focal distance (and other) changes, from near to far, etc.

11:04am

I think paying to have a space for me to work, a cowering space, would be good for me socially - outside of my current primary destination to be around people, busyness, distractions of Balzac’s cafe. I was reminded, had memories arise, a few weeks ago when I was in a Lyft shared ride that ended up going down around the Queen and Spadina area. I was reminded of the time spent in a coworking space I started working out of with my then new girlfriend and business partner I brought into helping me with I Live Yoga - in particular with outreach and support. Along with the memories were the feelings of good experiences that were able to make it up through the new level of reduced pain from my last stem cell treatment. It made me think at the time that I’d like to get back to that place. At the time I was still unsure, doubtful if I’d ever be able to get there, get back to the point where Anastasia and I were excited about life, in a good routine, working and passionate about a project we both loved — and that was ready to start scaling; my physical pain had started to become too much for me to handle however, and though I struggled to keep things going, at one point I had to give up — let go. The relationship with Anastasia ended and psychologically it was very difficult to let my “baby” go — as is often referred to as an entrepreneur’s project — especially since for at least a year I was using the project as a mental distraction, focus for the pain. I kept trying and essentially being reminded that it was too hard, and then making bad decisions. Ultimately it was the last try two big attempts to keep ILY alive and moving forward, to find to find good, capable people to move ILY forward without much guidance from me were: 1) attempted to hire someone to takeover Anastasia’s role of outreach and support, and 2) hire a local designer — who ultimately took $5,000 from me, an initial deposit out of a first section of work worth $10,000, and ended up doing barely any work. I will eventually write in more detail about this: I will name her as well as a consequence of consequences that lasting forever — karma — until they are righted, or ignored, and then light can be shone for those who pay attention to me — highlighting that this is how this person conducts themselves. These consequences, bad, hurtful behaviour lacking integrity or simply exposing unskilled or underdeveloped behaviour — where a point of learning is the opportunity presenting itself, if only for a safe container was present to allow it. This karma, consequences, trickle through time — allowing for multi-generation dis-ease progression in all aspects of life. Karma is still playing out and trickling through society, our energies, frequencies, decisions — from major suffering and events such as Nazi Germany and every new suffering starts a new ripple that will all need to be addressed. It must all be addressed by individuals. This allows for healing to happen in a decentralized manner — and allows for people at different parts of dis-ease or on path towards healing, enlightenment — being enlightened, developing understanding and compassion — and so even those who may be repressed in places like China, the light will make it through the cracks — which all rigid containers will increasingly have as pressure mounts; whether that is your ego mind’s control, guard of “protecting” you from fear/trauma and scarcity mindset, or a nation state who wants to contain what knowledge and information is spreading; these are both a condition, a dis-ease state, a symptom of ego mind’s greed and control going unchecked within oneself.

When I have kept my movement and activity greatly limited as I still must, I am able likewise to get glimpses and enjoyment at the thought for a goal I had roughly a decade ago: to be leading yoga classes, to further develop my own yoga practice and to guide others to teach them what I learned — also developing my own skill of speaking and holding space while actively guiding people in the present moment.

Someday I’d like to find and be able to afford, and be able to handle the added activity of going to (or perhaps they could travel to me?), singing lessons — so I can improve, develop my voice, for a growing list playlist that I’ve entitled New Life that I’ve been building mostly for motivation, a reminder that I at times have played multiple times daily as a distraction from the pain.

I’d also like to learn basketball, so if I ever decide it necessary to run for Prime Minister of Canada to get Canada on course, then I’d challenge current Presidential candidate Andrew Yang to - and kick his ass - in a game of basketball; a more physical activity that I may never be able to do again however — so I’ll just have to enjoy the thought of being able to hangout with Yang.

11:41am

I still have strong emotional resistance (PTS) to diving into and finishing an update reply for Dr. Trotter on behalf of Taylor. I don’t know if I will get to it today - there’s ultimately no real rush as she’s in hospital and he only returns from vacation a week from now. I need to recover further and be in the healthiest, low activity level, routine again for at least a few days before I will be able to approach the task again.

11:47am

I can quite clearly now feel, notice, that while I have been wearing my reading glasses when writing and on my laptop — I just picked up my phone and was looking, writing some texts, and as I did so — with the straining or even just putting things into focus, that the eye pain very clearly increased as I was doing so; this to me confirms to me, a theory I’ve had over these years especially when my pain level was much higher, that the post-LASIK pain has created an aversion to my eyes working properly, normally, a resistance to changing focal points (as part of the symptoms, part of it disrupting autonomous function including tearing, moisturizing, of the eyes — that LASIK has been successful in dumbing down, minimizing, their #1 symptom of “dry eye syndrome” as something you can just use moisturizing drops as the solution to it); te regulatory capture and unquestioned loyalty or review by the industry and professionals in the field, incentivized by profits, is disturbing - and one of many issues that society must actively become better acknowledging — identifying, studying, paying attention to in order to develop industry-wide critical thinking in all practitioners involved.

1:21pm

I’m starting to allow myself again to checkout attractive women. I guess I’m ready to experiment again to see if the reduced pressure on my nervous system allows me better to manage sexual energy building, and unfolding as that does into emotions and managing of relationships of more potential intensity, emotionally and physical activity wise. Maybe I will start playing with the idea of dating again, making plans with potential partners; an “exciting” idea however one I have had to drop previously the last few attempts due to the pain level still being too high.

1:34pm

I decided I may fast today. That would allow me to — after being tired and mentally exhausted from Balzac’s — to go to Bampot Teahouse and hopefully stay there for a few more hours before I’d otherwise be hungry. It’d also help to more quickly clear the inflammation I caused from the sugar/junk I ate yesterday. If I do this I’ll take the probiotic tonight at minimum.

1:50pm

My body energy is quite low at the moment though — primarily I think as I’m likely out of a ketogenic state, so it might be a good idea to eat something tonight to let my body recover faster anyway.

January 31, 2020

Summary of yesterday:

The day that had become positive, later in the day, after my mental energy being exhausted - grounding me into my body and the pain, the eye pain - knocked me back down to reality again. I can’t date. The exciting ideas or plans for ideas are fantasy. I was reminded that even if I have a very productive or positive day then the next few days when my mental energy is lower, it’s more difficult to impossible to concentrate enough to distract myself from the pain. This last stem cell treatment, as predicted as the pattern has continued, allowed me to feel the eye pain more clearly, feel how it cascades and refer down my body more easily.

I don’t know how I am even going to afford my own cost of living soon, let alone the idea of paying additionally to have a coworking space to work out - as an alternate to Balzac’s cafe that I am bored of going to so often, for so long. And I still don’t have a routine that makes life tolerable. Streaming at night can be nice, however it is mentally exhausting itself. The Joe Rogan style podcast I had thought could be a nice thing to do to socialized, meet people, and chat regularly hasn’t gotten setup and I wouldn’t be able to organize and manage it anyway. Likewise the money I’ve had to spend on stem cell treatments and will continue to need to spend indefinitely on unknown future diagnostics or future treatments is money that originally I had wanted to use to move my projects forward. Ideally I could raise $420k to hire contract workers to help me finish designs and specifications to then find developers to get estimates from - but developing a presentation and putting in the ground work to reaching out, meeting with, family offices to get them onboard and convince them of my plan: $420k, $4.2mm, $42mm rounds and sharing a high detailed plan for each along with an executive summary - the presentation itself will be difficult for me to compile, and then the ground work, leg work necessary, will certainly be too difficult for me due to the highly limited activity I must maintain in order to have more than less tolerable days.

Feb 2, 2020

Summary of yesterday:

I was planning originally to make a “summary of yesterday” - yesterday, but it didn’t happen. It was overall a bad day to which I was just waiting for 4pm when two designer friends, Akshay and Salar, were supposed to come over. They eventually made their way to me around 6pm. It was or wasn’t a very productive meeting. The purpose was to try to help onboard their help so I can try to move my projects forward, in part to decide a path, a strategy for what to focus on - for where they could help me and for where I could try to focus and use my limited mental energy to hopefully guide them towards helping move things forward at a pace that allows me hope.

I don’t know how much to share from the meeting. I don’t want to get lost, summarizing points from last night - of which there are two recordings of to hopefully review at some point for reminders, lost in that my mental focus gets spent where I can no longer conclude this to a point where I am “comfortable” publishing it - where I don’t concern myself of sharing “too much” that leads me to wanting to expand on what I mean, without having to continue a thought by injecting a relatable quote like “first they ignore you, then they laugh at you, then they fight you, then you win” for how grandeur my vision has evolved to; Gandhi, and as you may be able to tell, I like and tend towards being thorough - it’s a challenge until it will become a gift.

Feb 4, 2020

The hardest part to sharing my experience is that when it is most difficult it is most difficult to share about the difficulty. And perhaps as a natural fail-safe prevention mechanism, if I am to pass there are certain things I want left a certain way, however completing them, organizing them with how difficult the pain already disables me from doing so easily is even worse when I have lost hope and am struggling and too stuck in the pain, and so the final 3 or 4 things I hope to have organized before I go haven’t really been able to get done. I am at the point now where I will just let go and forgive myself for not articulating what should be to expose certain fights for what is wrong in systems in society.

I just got 1 of 5 things done - sent an email as final attempt to try to find someone trustworthy to help my mom finish her house so she has a peaceful place for retirement. 2 of 5 will be posting this. 3 of 5 will be emailing a naturopath with an update re: Taylor although I am no longer hopeful she will have a container that will actually lead her to problem solving her issues, so unlikely anything will come from it. 4 of 5 will be briefly updating long form version of Taylor story. 5 of 5 is trying to compile what I can about the post-LASIK eye pain, what I have tried to heal my body including the eye pain, and how the eye pain has remained the constant and the majority cause of the executive function troubles I have - as has become more and more obvious as I have healed significant pain in the rest of my body nearing having likely more than 10 stem cell treatments now over the last 3+ years; something I would hope to share with the Boston eye doctor/researcher, with the lawyer who filed the Canadian class action lawsuit against LASIK and the doctor who did my surgeries, and in general for the community in general and perhaps the “Lasik Complications Support Group” on Facebook - so maybe anything that I tried would give them insight into what might help them or perhaps help problem solve a solution.

Aside from trying to get these final 5 things written, I no longer am going to attempt to write anything regarding to who would get my business projects, life’s work - Elon Musk and Dr. Jordan Peterson can share ownership if either of them wants my domains, designs, what I’ve written and so on; likely not because they are compiled well enough to transfer - though they would together both be most competent at understanding the ecosystem of platforms, holistic scale, and multidisciplinary health-wellness approach of my plans. I also no longer am going to attempt to fill out a form that is prerequisite to trying MDMA-assisted psychotherapy - a hope I had that maybe it would reduce stress in my body enough to make the pain more tolerable, however I am quite certain it is the ongoing, constant, trauma from the eye pain - though certainly it has made these past years also full of trauma. I am just trying to get myself to an appointment Feb 19th to try AmbioDisk for my right eye, and then to get to 2 more stem cell treatments in San Francisco - however it is difficult to even bother trying to hold on to get to those because the AmbioDisk, if my eye can tolerate it, will only help while wearing it - and it will be a brutal, impossibly strong reminder once I have to expose my eye to air again, and the stem cell treatments though they will reduce pain in my body again - that, as every other time as resulted in, will result in my just feeling the eye pain more clearly, and how it refers out and sensitizes my body.

Feb 5, 2020

One reason I don’t want to actually post this is due to the large amount of explanation that hasn’t happened, describing everything I have tried, all the failures of our healthcare system - especially our “mental health” system - and still where no one has offered me an opiate prescription, so aside from having taken them post stem cell treatments for a few days - I don’t know if long-term it would make the pain and limited function tolerable enough to not constantly be struggling. Having, trying to explain over and over and over again over the years to different doctors, answering the same line of questions over and over and over again - never really getting much deeper into actually problem solving or trying to provide treatment options that may help. I am just done with this Canadian health “care” system - no one is going to know the true extent of incompetence, how broken it is, I don’t see myself being around to write about it. I will try to post the “Saving Taylor” post and update so there is a public record of it, 100% chance it won’t change anything unless someone actively pushes for investigation and change for oversight and accountability.

This is how much I normally struggle, at least 50% of the time I am trying to dredge at the bottom, where it’s dark - but regardless of how well I stick to a routine, to limiting my activity, to eating cleanly, to optimizing to have mental energy to counter the physical pain - to counter the disruption from the eye pain and the executive dysfunction it causes, the baseline dysfunction caused by the eye pain hasn’t improved in years, there is no routine or baseline that is tolerable; the two times the eye pain did permanently improve some with each treatment - first with autologous serum eye drops and then ProKera I did for each eye - the noticeable permanent reduction still wasn’t significant enough; and temporarily the Scleral lenses to be worn for only periods throughout the day, the dramatic executive function improvement I had with them, was impossible to maintain with that relief and function improvement contrasted each day at the end of the day when I had to re-expose my eyes to the air, triggering the pain again fully, and rapidly experiencing the cascading of symptoms - the mental disruption and the tension, sensitization, referring and building through my body; https://en.wikipedia.org/wiki/Scleral_lens

The other up to 50% is when I am delusional enough with hope, optimism, waiting for the next “big” stem cell treatment - in fantasy once tricking myself again that maybe this next healing will be different than the previous ones: where maybe my nervous system will reach a tipping point where the impact of the eye pain will greatly diminish due to enough pressure, pain, being removed from my nervous system. It never has happened though. This is where I am in a routine where I am not yet again bored of rotating through different social media sites - Twitter, Reddit - along with some other technology-related news sites, forums. This is when I am not yet completely bored of distracting myself with watching streamers on Twitch or watching YouTube videos. Days when I am in a routine and in a positive enough mood to enjoy and try to engage socially, in a routine going to Balzac’s cafe - taking a Lyft shared ride there and home again. The problem is nothing can actually move forward from this routine and routine itself is flawed in that boredom exists and that routine can’t really change due to the limitations the pain keeps me within; I can go out for stimulation, people watching, but there’s no gain in “teasing” myself if letting myself notice attractive women - teasing myself by allowing myself to think about dating or sex or anything nice, any of the creature comforts that come from relationships of various depths or intensity.

Cost is another factor. The money I have access to currently won’t last forever - and even if appointments like acupuncture or osteopathy would net positive, which I’m still not sure they are which I won’t explain here - at the moment when mostly going to those appointments via public transit, that amount of activity - the additional physical stress on my body on top of the stress the eye pain constantly applies, certainly counters most of the benefit from those appointments; likewise, acupuncture which I only did 3 or 4 weeks ago, and hadn’t done it for likely 2 years prior, allowed me to just feel my right eye pain as strongly and as clearly as I had ever been able to feel it - a strong, searing, burning sensation over the whole cornea that lastly as strongly for the next 8 hours - that searing sensation only diminishing as it slowly sensitized the rest of my body, just meaning it prevented me from properly perceiving it - but not reducing the executive dysfunction symptom. If I am in the better side of the difficult cycle then I regularly, daily, listen to my “New Life” play list - and often listen through the more somber but pleasant Jardim album by Rainer Scheurenbrandt; https://rainerscheurenbrand.bandcamp.com/album/jardim

I’ve written so many times about this pattern over the years, I hate writing about it now too - and why I am now struggling to even bother trying to get myself to a Boston eye doctor/research I was suggested to go to - however after the effort and cost of traveling to Boston, the being out of routine to not look forward to causing additional turbulence in my life the following 3-4 days, and after the $1300 USD cost, just starting cost, there is near 100% chance that no insights nor new treatment option that will come of it; it seems that I also know of stem cell research being conducted in the US that the main plaintiff in the Canadian class action lawsuit doesn’t know about, therefore nor does the lawyer, and likely also not this Boston eye doctor/researcher the plaintiff recommended I see - I’m guessing they don’t know about the mice/rat research from years ago either, the results of are which the human trials are being fast tracked in India; turns out the plaintiff who recommended me to see the Boston eye doctor/researcher hasn’t even gone to see him himself.

There has just been no point in continuing with trying to keep myself positive, optimistic - for as difficult as it is - once I am “flying” in it well enough, life can’t improve - relationships can’t evolve, I can’t move forward more in life. There’s been no point when letting myself mentally get excited about my projects or ideas to fix all of these broken systems - it just causes there to be more pressure, a stronger aversion to fight against, the pain to fight more strongly against - and trying to use executive function to try to move those ideas forward in any capacity, just the attempt adding pressure/stress - and then the potential consequences of trying to find others or spending money to hire others to do an uncertain but large amount of work necessary, is a lot - and certainly more than I am reasonably capable of handling, and even if I had the financial resources to hire and manage a team to do the work - managing would likely be too stressful as well; https://news.ycombinator.com/item?id=21885586

I’ve tried twice now from different places in the last 8 months to get a referral for someone to speak to to see if the pain having been reduced as much as it has, if there was any value in talk therapy. Still haven’t heard anything back re: an appointment - though I was doubtful anyway that the physical cost of going to the appointment would result in net benefit anyhow.

And there’s nothing more I can do to help Taylor - the system isn’t going to be able to hold the safe container she needs - other than trying to send an update to her naturopath re: trying to problem solve her gut pain and nausea (that psychiatric doctors haven’t cared about nor understood the dis-ease progression consequences of for years), so I don’t have that hope or drive for effort to try to distract myself with any longer either; I don’t understand how psychiatry got a monopoly on hospitalizations, not only a monopoly but an exclusionary monopoly - where there's no requirement to work with other fields/disciplines, how isn't this considered or acknowledged to be neglectful by default, by design?

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arthurhwalker · 5 years

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Managing Severe Anxiety

Severe anxiety drastically impacts one's quality of life, afflicting one with somatic symptoms, and playing havoc with the social calendar. In the last year, I've had my worst bout with anxiety, and after three trips to the ER, lots of mistakes, trying many things, I finally feel like I'm on the mend. What's worked for me, may not work for everyone, but it may lead a person toward resources for finding their own solutions.

I'm not a doctor, or anything close. I'm a creative, and a thinker, and while I haven't found a silver bullet for severe anxiety, I've found some things that greatly improved my quality of life. Before I begin, I want to state, definitively, none of this is a substitute for therapy, taking your medication, and having a doctor you like. Consider seeking those things first.

Note: Nothing talked about below will fix you, but it might make enduring your severe anxiety less wretched. Read on!

Defining Severe Anxiety

I'm not going to do that here, mainly because I don't want to put a trigger warning on this. If you've had somatic symptoms scary enough to send you to the ER, you can probably put yourself in the severe anxiety category. Severe anxiety doesn't come out of nowhere, it has a trigger, and figuring that out requires professional help.

What allowed my admittedly pretty bad normal anxiety to transform into the more severe variety was a lack of understanding my own body, the processes that regulate it. I've had my mental health fail a couple of times before, and traded a couple of savage blows with depression. I thought because I had basically beaten depression, I was on the other side of it all.

Trauma doesn't work that way. Being fearless doesn't prevent your body from having a biological reaction to staring down death, the threat thereof, injury, tragedy, and loss. Humans survived by keeping a certain standard of evolutionary fitness, and these primordial impulses will not be denied, even in the strongest of us.

Building Awareness

One of the things that contributed to my anxiety was a lack of a baseline relative to how I was feeling physically. My anxiety messes with my digestion, nervous system, and cognition, creating a host of somatic symptoms. I didn't have anything I did every day to create a baseline of awareness into how I was feeling.

Variety might be the spice of life, but rituals are the meat and potatoes.

Fight or flight turns certain sensations off, or down to low. Because the body believes there is danger, it doesn't bother with letting you know you're hungry, or tired, so you can keep fleeing or fighting. If your anxiety is severe, actually feeling tired or hungry can be a welcome sensation, as they become more rare. Anxiety robs one of their physical awareness.

To combat this, I've been doing thirty minutes of yoga every day. There are lots of benefits to low impact exercise, feel free to draw your own conclusions, and do your own research. Yoga won’t work for everyone (find your own thing), but for me, it was a good way to create a baseline.

Whatever you choose, make sure it’s realistic for you to do every day. When I travel, my yoga mat goes with me. I treat it like a prescription bottle of pills, or anything else you don’t leave home without.

So, if I felt bad, but flowed through my yoga, it was probably just my anxiety, and I likely had the physical resources to go on with my day. If I struggled through my yoga, it meant I was probably dehydrated, my sleep was subpar, or I hadn't consumed enough calories recently. Regardless of how I felt, I should probably take it a little slower through my day, and conserve my resources.

Meditation has been a good way to create a baseline for me as well. If I could easily empty my mind, and just be for ten minutes, I probably had the mental resources for outings, shopping, or social excursions. If I struggled with ten minutes of meditation, I might want to seek some solitude, drink some calming tea, or deal directly with whatever is occupying my thoughts.

At the center of both practices is breathing.

Breathing

My anxiety likely comes from an overdeveloped, overworked, fight or flight response. This autonomic response is designed to protect us from all kinds of mayhem. However, it can get so sensitive and overworked that it gets tripped by the smallest things.

We can't really control the rate at which our heart beats, our hormone response to hot and cold, or how quickly, or slowly, we digest food. One of the only autonomic processes connected to fight or flight that we can control, is our breathing. Letting the parts of your brain that control the autonomic process know that you're safe seems to be most easily accomplished with the breath.

Feel free to look up all the recent and not so recent research on the topic. I was surprised to find little conflict. Breathing is good, particularly if you do it correctly.

For me, I breathe from the belly, low and slow. Breathing from the chest is what I did as an athlete to amp up, and it turns out the opposite, low and slow, can bring your autonomic fight or flight response down. That part of your body only gets a little input from the higher functioning parts of the brain, and thus lives mostly in the dark relative to what's going on around you.

Telling myself I'm safe, while breathing low and slow, long and deep, five minutes a day, has really helped me out. It's a good practice to have if you're having a panic attack, and can possess the presence of mind to alter your breathing midstream. What helps me avoid being in that position is to carefully curate the aesthetics of my life, my safe places, both in the real world, and in my mind's eye.

Aesthetic Curation and Positive Association

Anxiety messes with our perception of time. The purpose is to give the mind more space to react to danger. However, it also accentuates discomfort, pain, sadness, and anything else one feels during periods of intense anxiety. Creating positive associations has really helped me.

I hate taking my medicine, so I put a picture of my wife and I at a beach on the medicine cabinet. I think about that cold day on the East Coast when I take my meds. It's gotten to where it takes such a small cognitive toll that I often have to count pills to make sure I took them. That's nice.

Sleep was a problem for a long time. Severe anxiety, fight or flight, for long periods of time, will shut down peripheral systems in the body, like salivary glands, and tear ducts, messing with digestion, and restful sleep. I used to dread going to sleep, so I changed everything I was doing, and took action.

Just to get sleep, I have...

Moved apartments, to one with a smaller and quieter bedroom.

Painted the wall opposite the headboard a soft yellow, nice to fall asleep and wake up to.

Bought a new bed, with an extra layer of memory foam to make it as comfy as possible.

Spent weeks waking up with the dawn, going outside to meet it, to rebuild my circadian rhythm.

Bought a triangular pillow so I wouldn't worry about waking up in the middle of the night to acid reflux.

Procured prescription toothpaste to help with dry mouth.

Keep dental mints in the nightstand so I have options if it wakes me up in the middle of the night.

Use eye drops when my eyes are dry.

Take ibuprofen when I hurt, even if just a little.

Take a diphenhydramine sleep aid, to make me drowsy, and help me breathe better.

Wear a sleeping mask with a curved covering so the fabric doesn't wick moisture from my eyes.

Wear a buff around my head to keep my long hair from getting pulled if I toss and turn.

Monitor my sleep with an app on my Apple Watch.

Have ear plugs in my nightstand if there happens to be noise in the night keeping me up.

Have the main lighting in our living room set to automatically shut off at bedtime.

Have eliminated all but a couple small lights in the bedroom; night time is bed time.

Go to bed religiously, roughly at the same time, as if it was a sacred ritual.

Talk about something nice with my spouse before I sleep.

Wear blue light blocking glasses in at different times throughout the day.

Use most of my electronic devices in night mode, unless I'm doing visual work for print.

Also: My spouse makes sure I have my favorite tea when I wake up, so I dread the morning a little less. <3

Good golly, that seems like a big list of things, but working on a sleep ritual that works for you is pretty key. There likely isn't a single silver bullet, but a long list of things that make up a ritual. Sleep is the cornerstone where managing my anxiety is concerned.

This was illuminated to me recently while traveling from Wichita, to Seattle, to Anchorage. The return trip was much harder than the initial, with the amount of sleep preceding each bout of travel being the defining factor. I can't burn the midnight oil anymore, I gotta have sleep.

As I alluded to previously, to get proper sleep, I needed a safe place to do it.

Safe Places

Part of my therapy required having a safe place to go, both in the meat space, and in my mind's eye. When we moved apartments, I did everything differently. I don't work at home, and the rigors of what I do can't find me there. Beside my favorite place to sit, is a smaller exact make and color of the blanket I use to sleep. My wife's artwork hangs where I will see it as I leave, and as I come home, a visual signal that I'm entering, or leaving, my safe place.

Creating this neurological baseline took weeks. I was surprised how readily my subconscious mind accepted what my rational self would dismiss as flimsy gimmicks. The autonomic process that regulates our fight or flight is remarkably simple, and the simplest stimulation seems to work best. In other words, the closer to whimsy, the better.

In my mind's eye I had to create a safe place. For me, it was Coronado Heights in Lindsborg, Kansas. It's a tiny castle on a hill, a strange thing to see in the rural Midwest. It's quiet there, and I have reconstructed it in every detail in my mind's eye. How the stone feels at the hand, the smell, the wind, the way the inner chamber echoes, the reddish hint the soil has there, everything.

I've used it as an internal focus for dealing with the banality of my life. In the worst of times, my wife and I would flee to Lindsborg for the weekend to recharge. If I have to do something I don't want to do, I wear a t-shirt I bought at one of the shops in Lindsborg. When I take a shower the day of that difficult task, I use scented soap I bought at one of the stores in Lindsborg. I've made that tiny idyllic town my cognitive safe space, and built many positive associations with it.

Recently, a high school student (and aspiring graphic designer) made a t-shirt, looking like a vintage travel advertisement for Coronado Heights. It's gorgeous on it's own merits, but has special meaning for me. I look at that shirt the same way I would ballistic armor. It is a neuro-cognitive trigger, and countermeasure.

This isn't the only way to create positive association however. Emotional support animals can die, and special places can be bulldozed, but these things wouldn't be precious if they weren't vulnerable, and finite. Being able to build new, even baseless positive association is important. I used to scoff at people that named their cars, or had sentimental attachment to objects.

I kinda get it now, in moderation.

My spouse and I found these tiny plastic chickens in a shop full of Wichita themed items. We decided the chicken is lucky, and made it a totem of travel, so we can safely return home. I carry my tiny totem in the case for my glasses, a reminder to keep my perspective. During our last trip, my spouse lost her tiny chicken somehow. We'll have to go get her another one, but the association here is simple.

So much of what causes anxiety is beyond our control. Sometimes it is the silliest thing that can dispel that helplessness. A tiny plastic chicken that makes you smile can have an enormous impact on your mindset. Humans use totems as part of their association with everything, their relationships, and their fears. The plastic chicken is just my way of gaming that particular societal construct.

Also, I can always get another plastic chicken if it is lost, no fucks given.

Not Giving a Fuck

The Internet has given rise to the notion that our ability to care about things is measured by a resource referred to colloquially as "fucks". There's pop culture and self-help books a plenty that hold to this concept. I think the use of profanity in this case is uniquely appropriate because it gets a person's attention. There is a stark and necessary distinction between "no", and "fuck no".

Managing my anxiety has often been directly proportional to managing what sort of things I give a fuck about, and when. Telling someone that I don't want to hear about what they don't like, and that I would prefer to hear about what gives them joy, changes the flow of fucks immediately. Avoiding the wasteful distribution of fucks to things that only feeds my helplessness has been vital.

Stopping myself midstream (usually right before I post or respond to something on Facebook, haha) and saying internally, "No, I'm not giving a fuck about that, moving on," has been a powerful thing. I've immediately, and definitely, given myself permission to not expend emotional resources on a given thing. I put my fucks safely back where they belong, in the bank, to be spent on things that really matter to me.

Educating myself about the known science behind anxiety has helped me be merciful toward myself. Specifically when I fail to act, or act or perform badly due to my anxiety. I can understand that the malfunction isn't a weakness, but an overdeveloped safety mechanism that I've had to rely on too much.

Saving my fucks, as a cognitive resource, gives me the space to endure when I would otherwise succumb to a panic attack.

Space

Managing anxiety, for me, is about creating distance with my fears, and surrendering to forces I cannot control. There is no one thing that creates that distance, and getting space is usually a combination of things that I've done as part of my ritual of wellness. I've tried supplements, fad diets, functional medicine, aroma therapy, and some cringe-worthy new age bullshit to manage my anxiety.

What shines through is I seem to win in finding the things that let my brain stem and limbic system know I'm actually safe. To that end, the simple things that tap into the few narrow means of communicating with our autonomic selves seems to work best. Identifying what trips your anxiety is pretty important in getting space away from it.

My phobias and fears are deeply rooted in my subconscious, to the degree my body responds even if I'm not thinking about it. It's the stimulus that is the mind poison. My physical resources play directly into whether or not I panic, or fly through those situations safely. I have to (as my father calls it) front load for life, and forgive myself when those preparations fail.

Sometimes, nothing will keep me from a crash. How soft the landing, and how quickly I bounce back, are directly related to how well I front loaded. Our bodies can't turn on a dime, and most of the countermeasures I've developed took weeks or months to take hold. I had to keep a journal of my symptoms, and chart my progress in a spread sheet to unlock what worked.

Even as I write this, my guts are trying to make a fist, and I'm feeling a little low. I know from months of experience that my sleep last night wasn't optimal, and I'm 90 minutes past when I usually eat lunch, and that is all this is. Having that knowledge, took time and a hard won deep understanding of myself.

You'll get there. Hang on. You'll get there. That's my mantra.

Nuts and Bolts

It's important to listen to your body. Ignoring your pain or discomfort, for me, has made my fight or flight response, my anxiety, worse. It tells my body things are bad enough I can't stop to rest, or eat, or seek solace. If I hurt, I take pain medication. If I'm constipated, I take a laxative. If I'm tired I rest. If I'm hungry, I eat. If I'm thirsty, I drink. I'm never far from some ibuprofen, my water bottle, a bag of lightly salted almonds, or a place to rest. I know where all the quiet coffee shops and libraries in Wichita happen to be.

Full Princess Mode, all the time, everywhere I go. I don't take on cognitive liability I can avoid, and I don't take risks with my mental health or safety. When I travel, I engage in the least amount of cognitive liability I can, and plan ahead.

I don't make myself do anything I know I don't have the resources for. I freely cancel appointments, politely decline new responsibilities, log off early for sleep, and engage in other culturally "selfish" behaviors. I don't ride the line with this either, and my sleep app has a keen feature, recording how much "credit" I have in my Sleep Bank. I'm shooting for double digit returns, eventually.

This frees me to make sure I am able to attend things that are important to me. I don't want to miss another wedding, birthday, or family reunion because I'm a wreck. I want to have the resources to do the important things, do my work, and spend time with people I love, for as long as possible.

Conclusion

Tell me what works for you in the comments. I genuinely care about this topic, and I don't think we can ever possess enough resources for life. I hope you found something useful in the text above, and that your tomorrow is better than today. Peace.