56 Years of Deep Sorrow and Joy

Call me when you wake up and you’re aging and god forbid have a serious illness. Life goes by fast and old friends find new paths and new friends find each other.I have bemolly 30en blessed by the best and the worst of humanity and have chosen to not hold truths back. I will answer any question honestly and as graciously as possible.

I made a very conscious decision to do this. It had to do with the moment I saw QLink (Commodore 64 baby!) global chat. It grew from there and since I had no plans to marry and pregnancy to term was not possible for me due to HPV-induced stage I cancer (cured by cryogenic surgery after 3 go-arounds). With heavy bleeding and bruising including nosebleeds and gum bleeds since babyhood, bedbound and “malingering” suddenly at 30 and 31 two ovarian cysts (same day a year apart!) hemmorhaged (pain as bad as childbirth as no relief until resolved) and I had to have several other surgeries. Thyroid nodules. Yadda yadda PMS. I was overweight. So mostly male doctors but one woman said “Lose weight, you’ll feel less fatigue.”

I was working on BBSs both small and Compuserve size, Gopher, FTP, WAIS and this thing called Lynx you could use to search and link to related documents.

I was only 22, alone, scared, hemmorhaging in Biology Class with the infamous James Lowell who handed out insults to everyone and I walked in late. He started on me and I put my stuff down, bleeding through several pads and turned and in front of 40 other students said “Fuck Off.” Turns out he is the father of a friend I made later on and told me I was one of a handful of students he had any respect for as I, an adult,  was being egged on by a faux authority.

I finished the class and got to St. Mary’s. I was hysterical and broken and sick enough to agree I was off my rocker and was placed on SSI (due to medical charts, clipboards, checklists and morality judgements. US Healthcare makes many patients into victims, then do it more, then disappear behind legal shields which limited-income folks like me can’t fight legally for any recompense for a life of iatrogenic (a word I hate/love) and made up medicine for pure profit. Thank you my dear mother of the cosmos who hated most doctors (atheletic!) and was very selective herself.

I did have a classic onset of Major Depressive Disorder but PTSD treatment (actions, not talking) worked when talk therapy made me worse! We are all different. But it bothers me as I told every trauma specialist I could talk forever and it just gets worse. This is now a way of differerntiating CPTSD from co-morbid symptoms. I don’t feel suicidal anymore, but I will self-harm to self-soothe. Add OCD Spectrum Trichotillomania, skin picking and Autistic Spectrum inability to compartmentalize and feel so deeply for others it can paralyze me but helps color my world! And yours.

Or, it’s all illusory and we are our own falsehood.

I take comfort in empiricism, consistencies in the chaos, and the chaos. I never had the life the middle class “white” (I still don’t know what that means) people did. I figured out lies beget lies in 2nd grade and avoid them, although I sure can tell ’em. I just can’t live with myself which is one area where self-harm comes from because I thought I was bad. I see bad after half a century and I’m not it!

I do the risk/benefit ratio math. Do you use the same radiation for an obsese (234 in 2013) woman as the shell of her at 125 by 2017? By 105 pounds at an oncology apointment I had a screaming fit of rage (fear?) as they said my BMI wasn’t yet low enough (even though low) to feed me. My PSYCHIATRIST helped me of all people and told me how to start eating. I’m up to 115 now.

They surgeon wanted my spleen, the math was not on my side. he wanted to take out my gallbladder, and scope around again in all the inner places while in hospitals on opiates and antibiotics. The math does not lie. I’m alive because I didn’t do what they wanted me to which was squeeze every bit of profit and pain out of me, keep me on antibiotics and opioids until I eventually went nuts, died, or went away.

Never confuse a healthcare as a service. I met a real Jesus who washed my feet that way. She was a poor Mexican Immigrant bedpan emptier. One for another day.

What 300 Baud Did For Me

Now all that isolation makes sense that a 300 baud Hayes modem and multiline BBSs were my door to what became my education, career, self-improvement, research, medical knowledge that can better some doctors (it’s been tested lol) mysteries, loss of family support (I never had it much anyway) should be of no surprise of the life students among you.

 

My Life, Blown Away

It’s funny, really. Malingering Molly didn’t really want to work and preferred living with what top scientists in the world didn’t know about yet and blamed on my having a womb. And George W. Bush. Also, I was getting political in musical and social pursuits and two recorded albums, one with my duo partner Patty Sunberg whose harmonies I miss terribly.

In my 30s I went through this emotional thought that no matter the “cause” of my symptoms, I was going to start living and had enough energy to do it for well, you know. And if you don’t, who cares. Life is an eyeblink after all!

This is on our digital album,
Courage Sisters ‘Life as a River’, with some complex vocals and guitar! Enjoy if you enjoy it!

Patient Empowerment through the Web

Until medical portals appeared (Score!), I was left uninformed by my Physician of 21 years that my bone marrow was failing, I tested positive for HPV and Cervical Cancer Stage 1, EBV and a very rare variant of HCV, the most deadly in blood and cancers and the hardest to treat when CFS was a euphamism for “Hysteria” and that my platelets and neutrophils were low, while spleen, liver, gallbladder and other systems were breaking down. I just wanted to keep going, which is what I do even when it seems I don’t!

I was a very angry person, traumatized by family and people I misguidedly trusted, but never my true friends. I had one week (so they said) to live in 2014 and the smartest Oncologist ever pulled me off a wide range of treatments and began an aggressive attempt to re-start my bone marrow aplasia.

This means I’m on “life extension” (there is no cure for bone marrow aplasia at my age in my condition – bone marrow donations by siblings are the one known cure and dangerous). I have a lot of problems with eating, losing 140 pounds in a year, suffering serious depression and self harm, loss of husband, mother, house – yadda yadda for those who have this background.

mollypinkhair

I had a lot of time to think about life, loss, love, behaviour, cruelty, war, politics, art, yoga, overtone singing and other things but my energy is very low and while I can seem manic, my physical body is just exhausted.

I want my friends to not worry. I want them not to think I foster negative thoughts toward almost everyone.

I have an incredible quality of life now and I had to fight for my life more than once with injuries, bleeds, infections and public disruption (not intoxicated I just express fear as fight, confrontation not avoidance).

You, Me, You and Me

I love this life, this beauty, I am so grateful I have had a chance to find it again, through your donations of love, money, wisdom, loyalty, kindness, a few hard slaps.

I celebrate every day, even when I’m crying. I’m famous for laughing and crying simultataneously.

Life is good. It’s the lenses we use that make up most of The Suck.

I hope this softens my disruptive life of infections and bleeds. I hope to do what I can as I can, and I know I will.

Love to you all,
Molly xo/m

How href=”” Could Change the World

Born in January of 1963, it was largely the U.S. counterculture from which I obtained my core ideologies. At the risk of writing “fluff” as author, speaker and my one-time partner in Crimes Against CSS Eric A. Meyer would say, I point to the astrological metaphor of the sign of Aquarius. Aquarian ideals are very specific:Humanitarian, science and technology, futurism and considered the sign of visionary genius.
I was born an Aquarius in what is referred to as the dawn of our age where humans and the technologies and systems we create intersect. It is in that intersection the opportunity to bring about the adaptations humanity requires to scale fairly across nearly 8 billion souls resides. It should not come as a surprise that my thinking and circle of friends is very wide and constantly challenged to be wider as well as deeper and more meaningful each day of life. After all, a futurist must preserve the present and the past and the lessons learned therein in order to bring forth human social evolution in an age of scientific awe with an unpleasant side of social disruption.
A more empirical example of this ideal was first shown to me at Los Alamos National Laboratories in Los Alamos, New Mexico, where I along with other early Web-related thinkers were being made welcome yearly as the U.S. Department of Energy came to Web and Accessibility Standards under the long leadership of other great mentors such as Stanford’s Linear Accelerator Center’s Computational Physicist Bebo White, one of the first humans to touch the Web at the very dawn of its unfolding life at CERN.
I believe it was a keynote to the internal talks and trainings we were undertaking and it was my first visit to Los Alamos, a breathtakingly beautiful place for all the sorrow it’s brought to the world (it’s where the atomic bomb was developed). Jeffrey Veen, well-known for multiple companies with strong roots in User Interface and Usability Engineering and Design spoke and dropped a profound bomb on ME. He demonstrated the U.S. Department of Agriculture’s website, which at the time had a page (table-based layouts!) that said “Have hay” on the left and “Need Hay” on the right. In that moment, an incredible mushroom cloud formed above my head and I have worked the concept over and over in theory and eventually, social practices involving concepts such as Radical Honesty, Transcendence of definitions of Race, Gender or Belief Systems and a social agreement that we work together to evolve and aid rather than devolve and destroy.
25 years into the Great Experiment of the Web’s life as well as my own I have seen this very simplistic have/need need/have of everything humanity desires within fair and reasonable limits: Clean food and water, shelter and environmental safety, productivity and service as ability permits. These basic needs are the first step in scaling human systems to an overpopulated, polluted, war-torn and greedy world of now into a progressively safer, stronger, wiser, calmer means of living our lives independently as well as together. People will say it can’t be done, but there’s living proof that it is done every single moment of the day somewhere. It comes in the simple gestures – leaving a good tip for a hard-working waiter or stopping to talk to an upset person and find ways to give aid without sacrificing personal or public safety. The model scales, mostly because it is simply the process of evening out resources for the sake of a greater goal for human potential. Our current models are failing to scale – miserably so – and it is my thought that the global rise of Nationalism beginning around 2016 – has much to do with people hanging on too tightly for fear of loss. What’s to lose, I have to ask? Job, life? We take care of the core needs of humanity: clean food, clean water, sturdy shelter and purposeful activity those problems go AWAY. Isn’t that the point?
What’s the problem then? I think it’s scalability and stuck-in-the-mud thinking born of unreasonable fears brought about by multiple factors including but not limited to: family of origin, nation of origin, race, religion, gender and gender identity, basically all the things that make us individual as well as part of a very real scientific whole.
We are all connected, we are star stuff after all. I consider my life blessed and very lucky despite that mushroom cloud that hovers over me, literal radioactive waste in my very marrow I know that we can do what we think we are incapable of doing, and that is find a way to live fairly and honestly in this world. I refer to that process as human interoperability in that we must interface with each other in the commons, in the workplace, in the home and in our own selves in order to nurture a future where life is valued rather than wasted, where resources are shared and distributed providing a sense of community and individual value without judgement – idealist you say? Absolutely, every day of my life, even the ones where I failed to die.

Fuck Money:
On Domain Names and the Open Web

The most difficult thing for others to understand about me is that money is not my tender.

I perceive money, and certain authority and powers that come with it to be falsehood, fake faces and lies. Have you watched the news in the last millisecond?

What matters for This Miss Molly is the movement of social evolution rather than devolution. For me, that requires new experiments, products, opportunities, collaboration, innovation and delicious rainbows of diverse ideas.

All of us are capable and fit to participate no matter what others define as “able” or “normal” or in some way, but very few of us ever are taught to use our actual skills to complement our lives. From every walk of life there is a human problem. We are caught in a perceived infinite loop that the one, the few and NOT the many are somehow better?

There is no Net Worth here! The stake is the potential to move the Web ahead. The heart is the place to hope again. A domain name is leased monthly for a non-living wage modest amount to my Medical Trust Fund until success (she writes, not considering an alternative – this is genius and there’s long history in all involved).

The longer-term success for all is, in my fantasy as I enter senior years, to leave this earth with opportunity for the ideals I’ve long held dear about the Open Web Movement, my role in it and a career spanning the entirety of the Web’s life and beyond.

Fuck money. I have very modest needs most of them not requiring money but support and kindness and feeling human and okay in life instead of the freak show I’ve too long thought myself to be.

All Hail. Hail!

A new personal blog to encourage more long form writing. The fun begins February something something. I’ve gotten both literally and figuratively shorter which is less conducive to focused topics and creative works. xo/m