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 been 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.
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,