Who Is My Family?

picture of molly in black and white

If the Web is really what I worked very hard in hopes of it becoming – a platform for social as well as a technological peer-to-peer have/need approach to the world – then this post should stand as one of the most important things I have ever done whether you understand that or not.

In the past year we’ve all had devastation of some sort, none of us gets out of this life without extreme pain. That the entire world is chaotic and in what I perceive to be the darkest of times in my 50+ years here appears to be the general sentiment of the vast majority of humanity speaking up.

My work ethic isn’t a healthy one. I’m insanely over-productive because of a damaged, hard-wired belief that my entire being is worth nothing, and that I have no right to life. This was what my father told me both in action and in literal word for word communication. That I amounted to anything at all is down to my strong mother and ME.

And in the near past, the one man that ever loved me for who I am as I am, my husband Ray, who is in hospice and will die within the week. A noble and great soul, a US American Hero, a social justice warrior, a rural physician who took care of this nation’s poor and disenfranchised, street people – for nothing more than a thank you or some eggs and chickens or just because. That’s the man I married – a person far greater than I. And that is who I am losing, a piece of myself that is also far greater than I.

I could have sat out this entire life and career on disability as I received that 100% at the age of 24 (so 30 years, longer than the Web). But I couldn’t. So what I did accomplish in this world and for our industry while dealing with the unfolding of what was a 30 year brutal and rare disease because doctors thought I was “just depressed” or “malingering” is impressive to me. It mitigates, at least slightly, the overwhelming sense of self-hatred and failure that’s been my main demon since I was a very small, and once very joyous, little girl.

I remember the first day I went to work at Opera Software, I climbed up a hill through feet of snow and was exhilarated. I was also hemorrhaging, and did it anyway, my blood on the white fjords of Norway an image imprinted on my brain not as sorrow, but as pure resolve and courage to live life no matter what.

A person doesn’t do what I did for money. I did it for idealism. For reasons to improve the world using the digital medium – the Internet, and yes, I was here before the Web doing this – and then the WWW for the entirety of its lifespan, albeit not my own.

I have social and financial needs as my family and friends are all far away or engaged in terrible losses or issues of their own, or really just faux friends, moronic ex-lovers and others who I foolishly thought love would heal. I have a cowardly and unethical blood sibling who considers himself a social advocate but shows me absolutely no empathy and who has not seen me in more than two years despite living mere miles (I’m told) from me.

Weakness is the man who thinks himself more important than the rest of the world.

Where are my friends with “Net Worth” – so many of them have it and they aren’t around. Where are the wealthy employers who don’t recognize it’s against Federal Law (as we still know it as of this second) to terminate a disabled woman in good standing and on medical leave much less at such a time? My advocates, attorneys and ombudspersons are the only ones now standing up with me, at my side. I have to burn others to be okay? How is that possibly conducive to peace, kindness and everyone’s dignity? It isn’t. And yet, it was so easy to burn down mine, so at what point do we continue to turn the other proverbial “cheek” as it were?

Want to break a digital and social divide and help me as I watch my husband leave this world and our beautiful time together, as I struggle to regain my own health, as I move to another state where I can get the resources and protections afforded to me that Arizona simply does not have the resources nor social stability or market to provide? Want to fill in the gaps of humiliation, abandonment and the disposal of what I recognize as my often chaotic, manic and hyper-intense but ultimately loving and decent human BE-ing?

If you’re reading this far, then you care or feel guilty and you can put that to use by doing one or more of the following:

  1. Donate money. Yes, I’m done feeling like a beggar. I was paid 1 dollar to every man’s 10,000 for my keynote talks. I received 4% of gross earnings on a book that made the author a lot of money and me around 565.00 USD. I did not know I was giving so much away for free, and back then I was young with life ahead and could have used that money to not end up homeless and penniless and buried in medical debt now for both me AND my husband’s care that was not covered by insurance – more than a quarter of a million dollars. So yes, sure, go ahead if so inspired and donate via my GoFundMe medical fundraiser please: ThanksMols!
  2. Offer accessibility rights advocacy and orgs money and time. My preferred organization is of course Knowbility and they need you. Go and do something good so others have opportunity. They are a loving and caring group and will move the universe if it is within their means. Give them some means – sweat, commitment, kindness, work, money.
  3. Stop perpetuating a Web and Web apps that are inaccessible and harmful. For me, this has especially harmed me with the lack of user controls in motion graphics, flickering animations, too many moving animations on a page – um, these are well-known legally binding issues. Learn WCAG, use the rules, adhere to them, advocate for them and if you don’t know how – get in touch with someone who does. Better yet, HIRE someone or a full team to advise you of your legal obligations to your site and app users, engineers, employees and the world. THE WEB MUST REMAIN AN ON-RAMP FOR HUMANITY.
  4. If you have other resources that can help at this time – I have a household filled with furniture, clothes and items that have value but am too exhausted and overwhelmed to sit here and try to organize a sale. Do you know of a fair liquidator for household furnishings, art, appliances and so on?
  5. Do something kind for another person. Not spontaneous acts of kind. Intentional acts of kind. Every single day.

Thank you.

End of My Day

Dying husband. Brother who hates me so much he can’t even tell me why after two years. Sick Mom. 118% rate hike for #Arizona due to dismantling of Obamacare and the mass exodus of medical insurers. I hate what has happened to my country, to my family, to this nation and to this world. I used to think I was so loud and obnoxious I hated myself.

If all this has served ANY purpose, it’s that I now realize I am a lovely human being who is quiet and calm compared to the world leader pretends and tyrants and fundamentalist annihilators of life. There are some people who really just want to see the world and humanity burn. I’m not one of them, but for those of you who do, may the fire that is my being leave you in the pain caused to every decent human around you.

I have worked so hard to find the love and forgiveness in my heart for even the people who have unjustly and in some cases unknowingly caused me personally more pain than any human should bear. I want to curse you. I want to hurt you. I want you to feel what I feel and understand the reason you’re feeling it is because of your wrongs.

I will own mine. EVERY damned one. If I did it, and I was the harm-doer, then I will do everything I know to set things right. And there’s a line.

You, my friends, rushed forward online with everything a human could possibly want or need during this really bad weekend. And still, not one person showed up.

Not. One. Person.

Don’t get mad at me if you tried. Hear me out because this isn’t about those people reaching out letting me down. It’s about what the hell is wrong with ME that this is the pattern I’ve set in my life and it iterates without escape. I know some people tried, some called and even said they’d get on a plane right away! It’s extraordinary and meaningful and yet there is some loop in my life that I always end up right here, without the support I could use.

My husband filled that role. No one else has ever been able to because I don’t LIKE being helped and it makes me feel ashamed and weak and yet here I am spilling my guts all over the Web’s floor. I am grateful to my core for those that reached out and actually did help us find at least a bridge solution.

But I’m empty and I’m alone and that’s been the story of my soul – blamed for 35 years because I have medical illness and disability – as if I haven’t done everything a human being can do to course correct? They didn’t even know what was wrong with me until the year I got treatment – 30+ years of wrong treatment, wrong diagnoses and the absolute horror of being told by my doctors, my family members and even ultimately myself that it was malingering, depression, personality issues, behavioral problems and that I was a very, very bad girl who should be punished with a sentence no lighter than death.

If you think I’m joking, let me clarify: When I was 13 my father burned my face while yanking me by the back of my head and telling me I was a terrible child (I had done nothing wrong – truly nothing) and that it was his right as my father not only to discipline me, but that he had every intent to kill me.

And despite that being the last night he was ever allowed near me and I would never see him again and only hear of his death 13 years later through a series of seemingly unrelated events, I continued to carry out his judgement by attempting to annihilate myself whether through drugs, alcohol, self-harm or otherwise.

I yelled, I screamed, I cried out for help so why am I still crying? Is there any place I will ever find rest or love or merely be able to interact with a friend or family member again without them either trying to control me completely or think of me as a malicious, vindictive person? I don’t understand how anyone can think that, and if they do, how can they possibly know who I am?

There are good times. There is joy. There are bad times. There is pain. There is also oxycodone which I’m going to take because I’m in a lot of pain. But at the end of it all?

There is really only now.