I ran across this article on one of the support groups I’m part of. I have a canned response that I give to medical professionals on this subject. When I go in for the frequent checkups that my chronic illness requires, there is always a mental health assessment form among the many other pages of questions to be answered. Mental health assessment forms that doctor’s offices hand out in a vain attempt to stem the numbers of suicides that occur among their patients. While I’m handing the paperwork in, I hold that page back and get their attention. Then I say,
“I can answer yes to all of these transparently worded suicide prevention questions that you ask, and yet I’m not inclined to take my own life right now.”
One of my doctors has heard the disclaimer so often that he heads me off with the comment “Yes, I know this doesn’t apply to you.” Regulations, you know. I can answer yes to all those prying questions about self-destructive behavior because experiencing chronic illness destroys the well-being of the person afflicted. It can and does destroy your feelings of self-worth to the point where suicide is something that you can contemplate dispassionately on virtually any clear-headed day.
“At least these fucking ears would stop ringing.”
But knowing this fact, that you are depressed due to health problems beyond your ability to control, and that you really don’t want to die right now, it’s just an option to contemplate in the unknown and unknowable future; this depth of self-knowledge removes the probability of taking your own life at the moment the questions are asked. The probability is removed because,
“Yeah this sucks but it ain’t the worst I’ve seen.”
It’s those moments when it is the worst that remain problematic. I know my worst moments. I’ve talked about them enough in the past. It’s those moments that I don’t think about how easy it would be to end it all. I try to think about something, anything else. In those moments I cling to those around me for dear life, because I know that they are the only things keeping me there in those moments.
May all of my fellow Menierians and all my brothers and sisters who suffer from chronic, invisible illnesses find comfort in those times of need. May all of us avoid his fate, if we can. Contact the lifeline if today is your worst day and you have nowhere else to turn. Don’t snuff the candle out and think the world is better without you. It isn’t.
I’m listening to Carl Sagan’s The Demon Haunted World on Audible right now (a hat/tip is due for the Skeptic’s Guide to the Universe here) I remembered reading this commentary on the celebration of stupidity somewhere online before deciding I needed to at least read the book once. The Facebook memories for today included a paragraph or two on the subject. Ah, memory hole plugged. I knew I’d read that somewhere before.
I started that status entry with,
It is a point of pride to me that I couldn’t sit through Dumb and Dumber. I never bothered to watch Beavis and Butthead; as in, ever watch. I know one joke from that series. I remember it only because I am unable to forget it.
A family member loved the show back in the day, and he and another friend enjoyed pretending they were Beavis and Butthead and would do that skit repeatedly until I gave up and laughed. Gave up and laughed, against my better judgement.
Stupidity is not funny. Stupidity is dangerous. Ignorance gets people killed. All. The. Time. Not knowing that your pool is the most dangerous place in your yard is what kills children every year. I stood outside on the deck in my backyard waiting for my now-crawling son to fall in the pool, and after he did fall in the pool I jumped in fully clothed to pull him back out. This was the third person I had saved from drowning in my life, the only time I knew that what was about to happen would happen. I knew that the baby would explore his world. I knew he would not know what to think of this thing called water and edge and pool. I knew he would probably fall in, and I watched to see if he did. When he did I was prepared to pull him out immediately, and the scare kept him from ever going near the pool again unless we were present and teaching him to swim. He swam like a fish at two or three, I don’t remember when exactly he took to water, but he was probably swimming better than he could walk for most of his childhood.
Knowing he would fall in allowed me to save his life and turn the unknown danger into a teaching moment that he carries with him to this day. Knowledge is power.
I don’t find stupid people amusing, I find stupid people threatening, and for very good reasons. Stupid drivers get other people killed. I see it pretty much every time I drive. Stupid people on their way to painful, deadly futures in their cars, and they’ll probably take someone else with them when they do that one stupid thing that gets them killed. Stupid voters elect poor leaders. It is not for nothing that MAGA=Misguided Appallingly Gullible Americans, this assertion is demonstrable, repeatedly. Stupid voters elected the Orange Hate-Monkey. The OHM himself acknowledges this with his damning with faint praise comment “I love the poorly educated.” Stupid leaders destroy entire nations. The OHM and his willful ignorance, his flock of the willfully ignorant in tow, are burning this country to the ground as I type this out right now. The idiots will not know they’ve destroyed the country until it is too late to save it from them, but they might as well be covering everything in gasoline and lighting the match themselves. Destruction is just about that certain.
I will not laugh at the OHM or his followers. They aren’t funny. They are threatening my life and the lives of my children, and I won’t allow those threats to go unanswered. There will be consequences for the two years of the OHM’s rule, one way or another. The stupid who voted for him need to feel this pain themselves, like discovering you are immersed in a liquid that you didn’t know was there, and no one told you how to swim before you fell in. They need to recognize danger and avoid it in the future. How will this lesson be taught? That is a very good question.
This behavior is part and parcel with the dismissive way that Republican pundits speak of Democrats and their policies “we don’t want any of that socialism ’round here”. They think, just like they always have, that they will retain power. They never think that they won’t win (see the ham loaf’s reaction to Romney losing in 2012) can’t even imagine that it is possible. That is why they were brave enough to touch the third rail of American politics in the AHCA and try to defund Medicare. We must defeat all of them now. All of them.
Walls, barbed wire, wars, hate, division, intolerance, exclusion, uncertainty, fear, misery in all its myriad forms, THOSE are the very things that drive people to drugs in the first place. THOSE are the reasons why marginalized communities have such high degrees of suicide and alcoholism and drug use. Because they are desperately trying to ESCAPE.
And for a president who preaches hate and division and intolerance and exclusion and war and walls and fear announcing in front of a room full of hate and division and intolerance and exclusion and war and goddamned WALLS that he is going to somehow stop the flow of drugs into this country — stop the very demand for escape that he himself creates and perpetuates every single day — that is the very pinnacle of ironic cluelessness. That, that right there, is everything wrong with modern conservatism in a single sentence.
If you want a world people don’t want to escape from, then you have to build a better world not higher walls.
As usual, Jim has the farce pegged. If you read the entire article at his link, you’ll see how he breaks it all down. It is a self-perpetuating excuse to waste lives and treasure, like most modern warfare. I have written extensively on the subject of the Insane War on Drugs. It is another of those issues that I have not changed my stance on, because I just happened to have been right all along. Even a broken clock is right twice a day.
But for the entirety of these last few weeks my hearing has been burdened by painful tinnitus. So loud that I can’t even soothe the sound away with rainymood or any other white noise treatment. I have a hard time forcing coherent thoughts through a barrier of noise that impenetrable, much less the capacity for multiple readings necessary to weed out all the random keystrokes that slip in when you aren’t paying attention.
I wandered over to a fellow sufferer’s blog earlier today (thanks to my reddit habit) and noticed he had put a new entry up on it. For those of you who don’t know what Meniere’s is, I’ll post a short quote;
Symptomatically, most people experience “attacks” of violent rotational vertigo (feeling like the room is spinning), a feeling of fullness and pressure in the affected ear, loud ringing known as tinnitus, and progressive hearing loss. Many sufferers also report nausea, cognitive impairment (brain fog), fatigue, anxiety, and depression.
Meniere’s disease affects .2% of the population, roughly the same rate of incidence as Multiple Sclerosis. Yet virtually no one has ever heard of Meniere’s disease.
Here’s the bit that caught my attention. A study I’d never run across conducted in 2000. The sample size is on the small side, but it still represents a statistically valid group. The attention grabbing quote was this one;
“Meniere’s disease patients are among the most severely impaired non-hospitalized patients studied thus far … Patients describe impairment in travel, ambulation, work and other major social roles as well as trouble learning, remembering and thinking clearly.”
While this is clearly hyperbole from an unknown author (I can’t seem to track down the original article quoted) the dense jargon in the study backs up the statement. Quality of life is reduced below the levels of deathly ill cancer patients. Very few of my vertigo attacks didn’t include my begging everyone in earshot to please kill me. The sensations are intolerable, and yet you have to tolerate them. You cannot escape them. Had someone offered me an easy way to end it all while in a vertiginous state, I would have readily taken them up on it.
That is what Meniere’s is like on the bad days. On the good days I just kick myself for being unable to accomplish the simplest tasks because I’m lucky to remember my name from one minute to the next, like the last two weeks have been. There are days I forget. Mercifully, there are whole months that go by and I’m not forced to remember why I’m not working in architecture anymore. Looking forward to having a few of those days sometime in the hopefully not too distant future.
Back to the point. The point of writing this. Meniere’s awareness. At the bottom of the Mind Over Meniere’s post (I hate that blog name. Sorry. I’m sure mine is annoying to many as well) is a link to yet another Change.org petition. One amongst thousands. This one seems silly, but maybe it will have a genuine effect if Bono can be convinced to help raise Meniere’s awareness. Who knows? Couldn’t hurt to have someone say the word Meniere’s in front of a crowded audience. Surely someone will notice.
The song they’re asking him to announce in front of is Vertigo. It goes to show you how far out of music that I am; I don’t think I’ve even heard the song before. There was a day when I knew every artist on the charts. Knew who they were and what they sang. The last thing I remember U2 doing was Joshua Tree. Are they still a thing?
Anyway. Sign the petition if you are so inclined. Maybe it works, maybe it doesn’t. All I know is that I want this damn ear to stop ringing so I can organize a few thoughts.
Editor’s note: 2019. We have another famous musician who has contracted Meniere’s disease. Huey Lewis announced in 2018 that he was ending his current tour because of the effects of Meniere’s on his hearing. Here he is talking to the Today Show,
On Monday, Lewis spoke of when the disorder – which causes vertigo, ringing and hearing loss – first surfaced. “As I walked to the stage [in Dallas], it sounded like there was a jet engine going on,” he said. “I knew something was wrong. I couldn’t find pitch. Distorted. Nightmare. It’s cacophony.”
Someone should get ahold of him and see if he is willing to be the poster child for Meniere’s. That is what we sufferers need. Someone to carry the torch of research for us.
January, 2020. Huey Lewis has decided to go back out on the road (archive.org link) I wish him luck, and he’s not the only popular act out there with a diagnosis (there is a female singer who has it too. I can’t remember her name. She’s the one who suggested elevating the head of the bed) that is still performing. When you have people paid to follow you around and assist you, it is amazing how well you can pretend to still be high-functioning.
He’s two years into his diagnosis. Let’s see how he talks about it after he realizes there is no return to normal. Not knows it. We all knew it, and if we think hard, we can remember what it was like to think “I can get past this.” When he realizes the cold hard truth of it. When he just can’t get out and do the thing that used to be easy for him.
That was me 12 years ago and more. I can bring those days to mind with some early posts on the blog. I was sure I could keep going, but I kept failing to fulfill the promises I made. Those dreams die hard.
The Westboro Baptist Church was forced to cancel its plans to protest at Leonard Nimoy’s funeral at the weekend when no-one would tell them where it was.
The group often descends upon the funerals of celebrities and soldiers with neon signs filled with homophobic slurs, but couldn’t locate the late Star Trek actor’s after planners decided to make the memorial private.
I’ve said my piece about Leonard Nimoy’s passing, albeit it took me two years to write what I thought about it and never posted the article anywhere aside from this blog. It is like a lot of entries on this public blog. They are here if anyone is interested enough to go back through the archive and look for them. These articles aren’t for general consumption, they are my thoughts set down for my own reasons, thoughts that I don’t mind sharing with the curious if there are people who are curious. So this blog entry really isn’t about Leonard or my feelings for Leonard or Spock. This is about a penchant for grandstanding in self-destructive ways by a particular religious cult in the US.
I have broached this subject several times on bulletin board systems and email groups, but I’ve never said a word about Westboro Baptist church on this blog because I really don’t have much of an opinion about the beliefs of others unless they potentially impact me or the people I love. I don’t talk about things that don’t interest me on my blog, so I generally don’t talk about religion. Being an atheist and freethinker myself, I have almost no use for religion, but there are occasions when the discussion of religion can’t be helped. This is one of those times.
The Westboro Baptist Church members are essentially the same as most other christianist/dominionist cults in that they think we are in the end times and they want to bring about the second coming of Christ. They hope to do this by provoking attacks upon themselves, and they do this by inciting rage in people who really cannot be relied upon to be sensible in the face of provocation. Those people are the survivors of tragedy, the funeral parties for the recently deceased.
What has evolved over the years that these protestors show up at funerals is, the Westboro Baptists are penned into a protest area where they are out of sight and hopefully out of earshot of the grieving. This is stalemate between the grieving and the protesting is achieved by local police forces who are understandably just trying to keep the peace. I believe that this entire effort is counter-productive and in the end ineffectual. There is a simpler, albeit more violent, solution that will end this stalemate, permanently.
We should not be protecting the Westboro Baptists when they attempt to picket funerals. What should be done instead is that local law enforcement takes the time to explain to the leadership of this church that the grieving are statutorily exempt from criminal charges if they attack outsiders who attempt to disrupt funerals. Funeral attendees are demonstrably not of their right mind. The leadership should be informed that picketing funerals is an attempt to have oneself killed as a martyr. That attempting suicide in this fashion is an admission of insanity on the part of the Westboro Baptists; and that they consequently can be detained without trial for mental evaluation indefinitely, and possibly committed to a mental institution for the rest of their lives if they insist on persevering in this deranged behavior. Then we as a culture sit back and wait. If the Westboro Baptists picket, they get to go talk to headshrinkers for the rest of their lives, the few of them that survive. I’m good with that, and they do need help.
As a side note, I’ve had quite a few people object that we shouldn’t require funeral attendees to kill the Westboro Baptists in this fashion. I agree. We should be able to have the insane committed for their demonstrable insanity. Insanity like believing that if they die martyrs they’ll go to heaven. That Jesus hates homosexuals (he doesn’t, that passage is in the part of the Bible that came from the Torah, the Old Testament) There are a whole host of ideas which are insane on their face that the religious really should be cautioned about espousing belief in, in public. What they believe inside their own heads is their own business. Just don’t expect the rest of us to endorse these ideas when you speak them or act upon them, because there are broader concerns that should be of more importance than their personal insanity.
Facebook status update backdated and expanded upon for the blog. This is the first of the Let’s Talk About Religion Then articles which will be published eventually. Chronologically it will appear before Atheism is Not a Belief System but that can’t be helped now. I’ve written many things in other places over the years and this monologue about Westboro Baptists emerged about the same time as my original authorship of the atheism article on that now defunct BBS that I continually mention.
I’ve been meaning to write this post for years. When I started the process in 2005, I never dreamed that it would take me several years and multiple advocates just to secure the disability income that I had paid for through my taxes for my entire life. But it did, and when it was finally finished my then attorney said “you should write this all down so that other people can find out how this is done. I’ll even refer my clients to it” (I’m going to hold her to that one) but months turned into years, memory fades, depression is an evil beast, and procrastination is a self-fulfilling prophecy.
A few days ago a Facebook friend of mine posted a link to an article about Alecia Pennington. Now, I don’t know how much of her story is true, but her tale of being denied basic services due to lack of documentation reminded me of the troubles I went through getting my disability approved.
…and it all started with the lack of a US birth certificate. Well, actually it started with a friend of a friend who said he could act as my advocate for my Social Security claim, but several years later it ended with my getting my own passport.
I gave up working very grudgingly. I had been out of work for months before my last official full time job. I worked some contracts in those months, but mostly I just looked for work and wished I could get hired on somewhere. This lack of full time employment went on for almost a year, maybe more than a year, and then I was offered two jobs simultaneously. There was a job available for me in Las Vegas that would have required me to move the whole family (I’m actually glad I didn’t take that one now) and the other job was here in Austin, working for an architect who was adamant he needed me. He said he knew what I was good at, was aware of what my health was like and needed me to save his business (his words) So I agreed to go work for him and turned down the job in Las Vegas that was offering more money.
I spent eight months working at my last full time job. Less time than I spent trying to find that job. Eight months of learning another CAD system (I think that’s 5 different CAD platforms) documenting the tools for other users in the firm, automating the process of modeling and document production as much as possible. The coup-de-gras for this whole endeavor was producing finish-out drawings for an office space in less than a day, just to demonstrate how the process could be completed quickly.
That work, the kind of managerial design work I loved getting into, coupled with spending an excessive amount of time on paper getting to that point, all while suffering with weekly active vertigo and the accompanying brain fog that slows mental processes (a side effect of the vertigo) I spent months finishing the modeling and documentation on the building that was my primary responsibility, when that project probably should have been finished in weeks. That fumble that I couldn’t explain outside of sickness ultimately left me jobless again with a family to feed and even fewer possibilities than I had a year previously.
I was literally hopeless at that point. The months of contract work that I had engaged in before that final full time job had taught me that I wasn’t as good at my job as I remembered being. The two or three part-time contracts I got after that last full time job simply underscored this fact. I was failing to do the work required because I could no longer picture the construction in my head as I had done previously, the mental trick that allowed me to do the job that I wanted to do was getting harder and harder to grasp.
I didn’t know what else I could do, and the bills kept coming in, my health care incurring mounting costs of its own on top of everything else. I was spending a lot of time helping a wheelchair bound family friend then, and she suggested I contact a friend of hers to see if disability was something I could get. Something to keep the roof over my family’s heads. Given that the only remaining choice that appeared to me was life insurance coupled with a fatal accident, I figured I’d give the government a chance to own up to the promise that I could rely on it to be there when I was in need. So I called her friend, and we started the process.
The first thing you need to know about applying for disability is that you have to have doctors on your side in order for the application to be successful. You have to have a medical finding in writing. A statement from a medical professional that you have an illness which is covered as a disability. Luckily for me Meniere’s is one of those illnesses, and I had an ENT who was happy to backup my disability claim. So we filled out the government application forms, got the statement from my doctor, and then we filed all the documents and waited.
You do a lot of waiting when dealing with the government. Every time I mention filing or documents, you should understand that at least a month goes by before there is a response. That is if you are lucky. If you aren’t lucky they lose your paperwork and you have to refile and wait another month (that happened more than once) It’s also worth noting that every single application for disability will be denied the first time. So if you don’t intend to appeal, don’t even start.
The first application was denied (of course) So we appealed. That appeal was denied. On second appeal, we had to go before the administrative law judge. So I got all dressed up and went to that hearing, prepared to throw up on the judge if I needed to. That appeal was also denied (I probably should have thrown up on him) This was the point when I realized that what I needed wasn’t just an advocate for my Social Security disability claim. I needed an attorney, because the advocate I had just shrugged and told me he tried. Trying was not enough, in my book. I was owed disability and my family had to have income, one way or the other.
If you are thinking of pursuing a disability claim, start by getting an attorney on your side and save yourself some time. That should probably be the first thing to know, but it was the second thing for me. My new found attorney and I started another application through the process. This second application had secondary documentation and signed affidavits from witnesses. This one was also denied the first time through, just like the last one.
We appealed. The appeal was denied. We appealed again. Then one day (months later) much like any other day in the life of the average chronic illness sufferer. Desperate. Feeling alone. Feeling like the world just wants you to die quietly somewhere. My attorney called. She said “the Meniere’s isn’t enough by itself. We can’t get approved with just the Meniere’s.” She paused for a bit. “Do you think you are depressed?”
Am I depressed? Well, I couldn’t very well admit that suicide was my only other alternative to government assistance (not without ruining the viability of that option) the only other alternative if I wanted to see my family fed. So I had to admit that I was struggling with just a little bit of depression. The entire tone of the conversation changed. She said something like that will make it much easier for me and got back to work on my case.
I had almost given up the faint hope that disability would offer when the approval for my claim finally came through. After two years of applications, denials and appeals, I was approved for disability payments. Just in time too, because we had scraped out the last of our savings and were in the process of hocking valuable items in order to get the bills paid that month.
There was just one problem, though. One tiny little hitch. Hardly worth the bother, really. See here, Ray Anthony Steele, you aren’t really a U.S. citizen.
I’ve paid taxes my entire working life, starting at age sixteen. I’ve never failed to file, I’ve never failed to pay. I even paid twice some years. Every time that the IRS audited me I wrote them another check, and they audited me every year that I was a card-carrying member of the Libertarian Party. I’ve paid my dues for 30 years. I think I’m a member of this club, this club called the United States, and I would be seen that way by the government except for one tiny little problem.
When getting a Social Security card, make sure that you bring with you all the documentation required to prove US citizenship; do not, under any circumstances, allow the person handling your application to harbor any illusions that you are not 100% a US citizen or allow them to submit the application without insuring that the box “US citizen” is checked. This is of paramount importance.
I was born overseas to parents who were in the military, stationed overseas. The hospital on the base where my parents were stationed didn’t have the ability to handle a premature birth, and I was early according to the doctor’s charts. So my mom went to where the premature birth care was, a hospital off-base that wasn’t considered part of US territory. All US military bases are considered part of the United States, just as all embassies are considered part of the country they represent. I wasn’t born on the base, I was born in England, at the hospital my mom had been sent to by the military doctors. As a consequence of this little snafu, I have dual citizenship. I’m a limey (it explains my love of a cuppa) as well as a US citizen. I have one of those birth certificates that makes conservatives sleep poorly at night knowing I live next to them.
When I got my Social Security card back in the dark ages before computers, we went in with my British birth certificate. They told us no problem and marked me down as not a US citizen. Forty years later, it really is a problem after all. It’s a problem because that little notation on my Social Security record means I can’t claim benefits from the US government. So, so long Mr. Steele, don’t let the door hit you on the ass on the way out. It matters not at all that taxes are deducted from our paychecks every time we earn a wage. It doesn’t matter that both our parents are American citizens. What matters is the checkbox next to US citizen on the Social Security form. Believe it or not it is true. Foreigners can not qualify for benefits.
According to the computers at the Social Security Administration, I wasn’t a citizen. We had stumbled across this fact earlier in the process and when it was noticed by the Social Security representative who filed my paperwork I was assured that if the claim was validated, the citizenship problem wouldn’t be an issue. I believe the phrase not a problem was repeated then, too. Except it was. Because my birth certificate is British. Very clearly British and not American. What was needed to clear this up was a record from the embassy in London stating that I was an American citizen born to US parents. This was a piece of paper I didn’t’ have.
At this point I started talking to immigration attorneys. Immigration law is a tangled jungle of lies and deception; and nobody, not even non-immigration attorneys have a clue how immigration decisions are rendered. I’m not even sure immigration attorneys know. I did find out that the specific document I needed was called a Council Record. If I could find that document it would prove that I was an American citizen born abroad, and I would qualify for disability.
A Council Record is an obscure reference for those who aren’t up on all this legal mumbo-jumbo. I’ll try my best to clear up the confusion here. The council (or counsel) in question in this instance is the United States ambassador to England and the United Kingdom. He is the councilor that has jurisdiction over births and deaths in the country that he is ambassador to, ergo Council Record. If you were born overseas you should have a document like the one above that says you were born to US citizens overseas. That is you US birth certificate, for all intents and purposes. Hang on to that document if you run across it. It is your lifeline to access government services.
I didn’t have a council record. I had never seen said document before. I had no idea what it looked like, so I started talking to relatives. I talked to my mom first. She remembered that I came into the country on her passport, that I was listed as a US citizen when I entered the country. Unfortunately she couldn’t find that old passport, it had been lost somewhere in the 20 or so family moves that had occurred since the 1960’s. So I went back to the immigration attorney. He told me it was possible to request a copy of the passport, if I was listed on the passport.
So I found that form. I filled it out, got it notarized and sent it in. Then I waited. And waited. And waited. I waited a long time, longer than any of the other times I waited on a government response through this entire multi-year process. The State department eventually did find and mail the passport record back to me, a lucky break at last, and I was able to use that record to apply for my own passport. That passport made me a citizen. After forty years of productive life in the US listed as a non-citizen, I officially became a citizen just to get disability benefits. There is some humor in there somewhere, I’m sure.
…and The government said congratulations citizen. Here’s your first check.
Hang on now. This check is for one month. I’ve been working on this process for nearly 4 years now. Am I not owed disability since the date of my first application? “Well, yes” the government said. “That would be true if you had been a citizen when you first applied. But you see this date on your passport, the one saying it was issued last month? That is when you became a citizen.” Once again, have a nice day, don’t let the door hit you on the ass on your way out.
Nothing doing. I am not giving up now. Four years I’ve been at this. Four fucking years. I’m not stopping till I get my four years of blood back. At this point I’m trying to exude patience and understanding, just to see if I can get through to the bureaucrat on the other side of the desk. I have this passport because my mother brought me back to the US on her passport back in the 1960’s. That passport from the 1960’s makes me a citizen. A citizen for my whole fucking life. It says so right on this document.
…and the government replies, “Well, that might be true, but that just means your mother was a citizen and she brought you home with her. Was your father a citizen?”
Was my father a citizen? Was my father a citizen?Well, he was in the United States military at the time I was conceived, so for all of our sakes I hope he was. I mean, we don’t want any foreigners fighting in our ranks or having sex with our women, that would be unthinkable.
I don’t know my biological father. I sent the man an invitation to my high school graduation even though I had never met him in living memory. He never replied to the invitation, has never attempted to get in touch with me at any point during my life. For all I knew he didn’t even care if I was alive or not. I was raised by two different men instead of by my biological father and both of them tried to be dad and failed in various ways. I have never seen a page of correspondence from my biological father anywhere in any record that I kept or my mother kept. He’s a cipher to me. A complete unknown. I wouldn’t know where to even contact him at this point. I don’t know if he is still alive (not sure if I care either) I’m sure he had a Social Security number, I’m sure he was a citizen. I’m sure he has a military record. I have no idea how that information is dredged up without contacting his family, which had also been tried previously and ended in failure.
So I asked the Social Security administration if they knew how to find his number, how to track down his military record. I started putting out feelers, once again trying to get that information, looking for his family to contact. However, the Social Security administration came up with the information all by themselves. Proving once and for all (for me anyway) that they aren’t all demons placed here on Earth just to torment us average folk. They attached his file to mine and approved the back payments without my having to do the costly and time consuming legwork of tracking down my father and armwrestling him mano-a-mano for his Social Security number.
After that. After the years of fighting. After the many setbacks. After the successful conclusion of the application and subsequent reversal of the judgement that I was not a citizen. There was a year or two of argument about paying my attorney and discovering that they had withheld two attorneys worth of money from my back payments, and so they should give me money rather than try to take money away from me to pay my attorney. But, I was a citizen and I was getting the disability that I had dutifully paid for all my life. My children had a home. We had food on the table. I was satisfied.
Then my dad died. The man who tried hardest to be dad, to care. The man I could rely on even though he wasn’t married to my mom anymore. Jack Steele, the man whose name I carry with pride, died. A decade of battle with cancer was finally over. He made up for his earlier failures, and I accepted his apologies and considered him my dad for a good number of years before the end, even though his genes are not my genes. I loved him. I loved his family and their history. I was very sad to see him go.
While we were in Colorado preparing for the funeral, going through old records and photos, reminiscing about the past, his last wife (my second mom. I think I have 4 now. Maybe even 5. Well, mom is mom, but then there are other moms. Yes, it’s confusing) she was suddenly struck with a memory. When they were going through the attic at gramma’s house preparing it for sale, they stumbled across a box of stuff that had been shipped back to the US from England when mom moved back to the States with me. There was a document about me in the box, and she didn’t know if it was important but she thought I’d want to keep it. After rummaging around in a drawer for a few minutes, she produced the Council Record that would have saved me years of work had I only known who to talk to about it. I just thanked her and gave her a hug. What else are you going to do, at that point?
That’s it. That’s my disability story finally written. I should probably see if I can track down the document numbers for the documents I submitted, just for clarity’s sake. But right now I just want to step back and admire the fact that I’ve written this damn thing. It took me long enough. Longer than it took to get my disability approved? Just about.
I owned that work on cassette. It was one of my first purchases, if not the first comedy album I ever owned. I listened to it so often I memorized it, before the tape fell apart and I had to stop playing it.
I loved Mork & Mindy. Watched his appearances on Carson. Went to see every film he was in, just because he was in it, and for no other reason.
I was outraged at Dead Poets Society, though. (spoilers!) I’ve watched it since, and I know now that I was wrong, that I shouldn’t have been so angry at the suicide portrayed in that film. But at the time I felt it was a betrayal, that it was an acknowledgement of the darkness in the world, that the film let the darkness win, by killing what I saw as the main character, the character I identified with at the time. Worse, I associated Robin with the film, because I had gone to see it specifically because he was in it.
All of us fight our own inner demons. I’ve fought with depression for many years, longer than I can count. Menieres has only made it harder to cope with, but the darkness has been there for as long as I can remember. It’s been with me so long that I don’t even remember when I made the pact with myself that I wouldn’t contemplate suicide.
It’s a sad observation of human existence that suicides increase when someone else commits suicide; this is especially true of prominent figures. Watching MSNBC’s coverage, I was struck by this when they flashed the numbers for suicide prevention on the screen. I feel it is a shame that Robin let depression win; and as someone who fights depression, and who knows there are others out there engaged in a daily battle with it, I have to see it as letting depression win. This is not a judgement on Robin, or an observation of failure on his part.
Depression is not cancer; or maybe it is. Cancer of the mental processes, perhaps. In any case, when the physical body fails (and it will, for all of us) then it really is over. But when the mind gets trapped in that inward spiral, no one can break you out of it unless you want them to, unless you want to keep living. That is a choice you make.
I will not leave a body for relatives to find, to ask themselves “what did I do wrong” when it isn’t about them. It’s about me. There will be no notes. No questions. Because (fate willing) I will not have to make that choice. I just hope I have time to write down all the things I think need to be related before that Mind That Bus moment happens.
Like Dead Poets Society. It’s not actually about the suicidal character; or rather, it not just about him. It’s about the mousy little guy who follows along for the whole film (my first conscious introduction to Ethan Hawke, another actor who’s films I try not to miss) never hazarding more than is required of him because he is too afraid to take that chance. It’s about all the other characters, sucking all the marrow because they had a teacher who encouraged them to live life to its fullest. Because we’re only here for a brief moment, and then we’re gone.
I’ve meant to write a postscript to this one for awhile now. On the revelation that Robin suffered from early stages of Parkinson’s, and that he had that road ahead of him clearly mapped out by others (including his friend Micheal J. Fox whose charity he donated to) I can easily imagine that he chose his time to leave rather than wait for the disease to rob him of his independence. Preferred to be remembered this way, rather than risk being the subject of pity; no longer able to ask people to laugh at him, with him.
That he had to kill himself the way he did is more an indictment of current societal norms than it is of Robin Williams himself. When you are stricken with a disease for which there is no cure, one that will slowly destroy what you were if not actually kill you outright, you are faced with some pretty hard choices. One of them is the ability to say “Ok, I’ve had enough now. I’d like to just check out.” A choice which is denied to the sufferer in nearly every case; requiring those determined enough to seek solutions to the problem, to resort to cruder tactics than they would have preferred had they actually had a choice.
I am convinced that Robin Williams is one of those people. Being denied the right to end his life legally at some point later, he chose that time and that place to act, right or wrong.
For me, it was the wrong choice. But then I’m not Robin Williams. Never wanted to be him. I just enjoyed his pointed wit, his ability to flit apparently effortlessly through characters; his willingness to laugh, and to encourage us to laugh, at his all too human foibles. In the end, it was those foibles, those failings, that killed him.
We sat down and rewatched Dead Poets Society as a family last week. Just wanted to see if his chosen ending for his life alters the way the film feels. In reflection, I think this film actually captures the real Robin; both the flashy in-your-face moments of characterization, and the quiet man who contemplates the meaning of life, tries to communicate the drive to find meaning to younger minds. In any case it holds up well, and I think I’ll have to dig up some of his other early works, dust off the Laser Disk player if I have to. Re-experience his work again, while the pain is fresh. Just to see if I can still laugh with him. I think I need a good laugh.
“O Me! O life!…
of the questions of these recurring;
Of the endless trains of the faithless
of cities fill’d with the foolish;
Of myself forever reproaching myself,
(for who more foolish than I,
and who more faithless?)
Of eyes that vainly crave the light
of the objects mean
of the struggle ever renew’d;
Of the poor results of all
of the plodding and sordid crowds I see around me;
Of the empty and useless years of the rest
with the rest me intertwined;
The question, O me! so sad, recurring
What good amid these, O me, O life?
That you are here
that life exists, and identity;
That the powerful play goes on, and you will contribute a verse.”
I ran across this article submitted by Susan Schneider Williams (Robin Williams’s widow) to the journal Neurology. He apparently suffered from Lewy Body disease, undiagnosed until after his death. She discusses her experience with him in the final days of his life in the article and in this audio clip from the journal.
Although not alone, his case was extreme. Not until the coroner’s report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.
Robin is and will always be a larger-than-life spirit who was inside the body of a normal man with a human brain. He just happened to be that 1 in 6 who is affected by brain disease.
Not only did I lose my husband to LBD, I lost my best friend. Robin and I had in each other a safe harbor of unconditional love that we had both always longed for. For 7 years together, we got to tell each other our greatest hopes and fears without any judgment, just safety. As we said often to one another, we were each other’s anchor and mojo: that magical elixir of feeling grounded and inspired at the same time by each other’s presence.
One of my favorite bedrock things we would do together was review how our days went. Often, this was more than just at the end of the day. It did not matter if we were both working at home, traveling together, or if he was on the road. We would discuss our joys and triumphs, our fears and insecurities, and our concerns. Any obstacles life threw at us individually or as a couple were somehow surmountable because we had each other.
The causes of his suicide are far more complex than anyone could understand until long after he was gone. I’m just now (Oct. 2017) able to look back on him and his work with a calm dispassion. Finally over the emotional hurdle of his leaving us in this way.
Here is a link to the book on Audible (or Amazon) I fell asleep to this audiobook for about two weeks or so. Because of this I’ve been having a lot of flashbacks to the times I laughed and cried with him over the decades. It wasn’t the greatest biography I’ve ever read, but then I read a lot of biographies written by a lot of talented people. It is definitely not the worst one I’ve read, either. I could have done with less dramatization of Robin’s work by the performer. No one can do Robin except Robin. The publisher probably should have spliced in actual cuts from Robin’s audio recordings for those segments. It would have cost them licensing fees, so I know why they didn’t do that. Still, it would have made the book far more enjoyable to listen to. Reading it may change the experience since you’ll be hearing Robin’s voice in your head if you have an active imagination like mine.
I learned things that I didn’t know about the subject of Robin Williams, the man, which is really all I require of the biographies I read. There were plenty of personal insights from family and friends and from interviews with Robin himself. I recommend the book even if you are only half the fan of Robin Williams that I am. Another great intellect has left us. He would not believe this of himself, but he made the world bearable and a little more understandable for me while he was here. I will miss him.
In the early 1980’s I was working at a production company. We were editing a segment for director Howard Storm. I was amazed then and after seeing it again amazed at Robin’s natural ability to make people laugh. I never had the privilege of meeting him but like us all, will miss him terribly. The world has lost a little happiness.
Another good interview with Julia Sweeney; this time concerning the upcoming movie made from her show “Letting Go of God“.
I neglected to mention the two episodes in the archive in which you can learn more about the hosts. Two of the earliest episodes feature one of the co-hosts interviewing the other. Both are memorable. One is Losing Faith in Faith in which we hear more about the history of the former pastor Dan Barker. The other is Religion’s Harm to Women and the history of Annie Laurie Gaylor. If I had to pick my favorite of the two, Ms. Gaylor is a more interesting interview subject (sorry Dan) although there is much to learn from Dan’s trip from believer to non-believer.
2006 Archive episode. November 11, 2006 – Physician-Assisted Suicide
Physician-Assisted Suicide is an episode that also struck a cord with me. An interview with Betty Rollin concerning Oregon’s physician assisted suicide law. If you don’t have a say in how your life ends, whose life is it anyway? Betty Rollin’s mother was dying, and thusly she has a very strong opinion on the subject herself. Author of “First You Cry” and “Final Wishes”; if you’ve ever had a loved one suffering from a long term terminal illness, then you’ll probably have an interest in this episode.
FWIW, any group organized around an idea can be labeled a cult. Libertarianism, Real Money, Environmentalism, etc. Someone quite rightly labeled the board this was posted on as a cult. I just used FWIW (For What It’s Worth) a type of special language developed for conversations with ‘those in the know’, a telltale sign of ‘cult like’ behavior.
But are they cults? Cults are damaging to the individual, warping their individual will and stealing their wealth. People damage their lives spending too much time on the ‘net, too much time volunteering for political efforts, etc. Is it really any different?
I don’t like the term ‘cult’. It’s one of the words that gets applied simply to discredit an organization, prior to attempting to dismember it from the outside. Where does freedom of association fit into that sort of scenario?
With tongue firmly implanted in cheek, let’s look at another ‘cult’ that is prevalent in society. The cult of Family.
TACTIC 1. The individual is prepared for thought reform through increased suggestibility and/or “softening up,” specifically through hypnotic or other suggestibility-increasing techniques such as: A. Extended audio, visual, verbal, or tactile fixation drills; B. Excessive exact repetition of routine activities; C. Decreased sleep; D. Nutritional restriction.
New parents are subject to extreme sleep deprivation and nutritional restriction, and new routines are introduced and repeated frequently. Feeding times for a new baby occur every few hours for several months, interrupting all normal patterns of life previously known including sleeping and eating. Feeding, burping, diaper changing, etc. are all new routines which, while simple and easy to learn, must be repeated when the audio fixation drill (crying) occurs.
TACTIC 2. Using rewards and punishments, efforts are made to establish considerable control over a person’s social environment, time, and sources of social support. Social isolation is promoted. Contact with family and friends is abridged, as is contact with persons who do not share group-approved attitudes. Economic and other dependence on the group is fostered. (In the forerunner to coercive persuasion, brainwashing, this was rather easy to achieve through simple imprisonment.)
New parents are frequently trapped in their own homes for months at a time, with only the new cult member for company. Former family members are excluded in favor of the new family member. Any former friends without children find themselves unable to connect to the new parent due to unfamiliarity with the new group attitude.
TACTIC 3. Disconfirming information and nonsupporting opinions are prohibited in group communication. Rules exist about permissible topics to discuss with outsiders. Communication is highly controlled. An “in-group” language is usually constructed.
A child so ugly you’d have to hang a steak around his neck to get the dog to play with him, will always be described as a “beautiful baby” in the presence of the new parent. Every new cult member (hereinafter referred to as ‘the child’) is a genius according to the parent, even if the child attempts to eat every object that he can get his hands on.
As for an in-group language, does the phrase ‘baby talk’ mean anything to you?
TACTIC 4. Frequent and intense attempts are made to cause a person to re-evaluate the most central aspects of his or her experience of self and prior conduct in negative ways. Efforts are designed to destabilize and undermine the subject’s basic consciousness, reality awareness, world view, emotional control, and defense mechanisms as well as getting them to reinterpret their life’s history, and adopt a new version of causality.
Every confrontation with the child causes the new parent to reflect on interactions with their parents, and to inevitably fail in comparison. Everything in the parents world is reoriented on the child and his safety, there is no other valid concern in existence. A parent can frequently be found hovering near windows and doors that provide a view of the child at sleep or at play, so strong is the concern for safety even in a house and yard known to be without serious threat.
This is caused by the fact that the genius child will attempt to eat anything he finds, and many things which the parent did not perceive as a threat previously, are in fact deadly when swallowed.
There is no life before children, once you have had children. Don’t believe me? Try to remember a time without them. If you don’t have children, ask the parent sitting next to you to remember.
TACTIC 5. Intense and frequent attempts are made to undermine a person’s confidence in himself and his judgment, creating a sense of powerlessness.
If the average parent was paid a nickel for every time they heard “but Johnny’s parents let him do it”, there wouldn’t be a need for social security. All grandparents would be rich people. This is not to mention the tantrums, the wheedling and cajoling that goes on in addition to the citations of the superiority of other children’s parents.
When the attempts to undermine the parents judgment meet with failure, disobedience on the subject simply underlines the powerlessness of the parent.
TACTIC 6. Nonphysical punishments are used such as intense humiliation, loss of privilege, social isolation, social status changes, intense guilt, anxiety, manipulation and other techniques for creating strong aversive emotional arousals, etc.
You have no clue what humiliation is until your child is dusting the supermarket floor with his backside in a screaming fit because you won’t get him the cereal he wants.
This tactic is, in essence, the same as tactic two. Imprisonment could be considered a holiday compared to colic and 4 am feedings. Social isolation and status changes? Gimme a break.
TACTIC 7. Certain secular psychological threats [force] are used or are present: That failure to adopt the approved attitude, belief, or consequent behavior will lead to severe punishment or dire consequence, (e.g. physical or mental illness, the reappearance of a prior physical illness, drug dependence, economic collapse, social failure, divorce, disintegration, failure to find a mate, etc.).
Fail to do your part with the child, and the other parent will make you wish you had a drug dependency to fall back on as a crutch. All of the listed consequences can and will be used as threats by either parent to ensure the continued support of the child.
Additionally, the cult is perpetuated by the parent insisting on the need for grandchildren, which must be provided by the child as soon as it is of age to have children of it’s own. All of the above tactics will be applied to the child in turn in order to ensure that the cult of family continues into the next generation.
Editor’s note: 2017. I hate this entire flippant fucking post. If I hadn’t made a pact with myself not to delete shit off this fucking blog this would be fucking gone in an instant. I wrote it and I can’t even bring myself to read all the way through it. Chirpy, stupid, juvenile, simplistic, saccharine bullshit.
I think that pretty much covers it. I could go on and tell my old self just what I really think; you know, just not pull any punches, but I’m going to do this instead,
Polygamy was the norm in Carolyn Jessop’s life. After all, her own father had three wives by the time she was in fourth grade. Her family was part of the Fundamentalist Church of Jesus Christ of Latter-Day Saints (FLDS), a radical offshoot of the Mormon Church. But Jessop’s own experience in the cult was so disturbing that she ran away with her eight children four years ago. Last month, the FLDS was in the news when its leader, Warren Jeffs, was found guilty of being an accessory to rape for forcing a 14-year-old girl in the group to marry her 19-year-old cousin. Jessop, 38, tells her extraordinary story in a riveting new book, Escape
As O’Shea tells it, Jones’s idealism was a large part of what made him so lethal. He tapped into the zeitgeist of the late 1960s and 1970s, feeding on people’s fears and promising to create a “rainbow family” where everyone would truly be equal. He was charismatic enough to lure hundreds of people to a South American jungle, where he cut off all their ties with the outside world.
If you have not heard of the Quiverfull movement, I’ll sum it up by saying that Quiverfull is an all-encompassing vision of a big, happy, godly family which affects every aspect of a so-called True Believer’s life. Probably the most recognizable Quiverfull family in America is reality TV’s Duggar family of 19 Kids and Counting fame.
You’ll find Quiverfull families in nearly all types of churches in every community. Quiverfull is simply the “pro-life” idea that truly godly families will “trust the Lord” with their family planning. Children are viewed as unmitigated blessings (“As arrows in the hand of the mighty man, so are the children of ones youth, happy is the man who hath his quiver full of them:” Psalm 123), so couples are willing to have as many children as the Lord chooses. All methods of conception control are considered a lack of trust in God to provide for the “children of the righteous.”
At the heart of Quiverfull is patriarchy: the ideal of biblical headship and submission. This is the belief that by God’s perfect design, the father is the head of the home. The father serves as protector, provider and shepherd for his wife and children. He is primarily responsible for the wife’s and children’s physical, emotional and spiritual well-being and with such responsibility comes the (divinely granted) commensurate authority over the members of his household. According to this view, God works through the father and he serves as an intermediary for his wife and children. Honor, obedience and submission are highly valued qualities because they are necessary to maintain order and work together to accomplish the Lord’s vision for a godly family.
This emphasis on patriarchy guarantees that, to the degree in which a Christian family puts Quiverfull ideals into practice, the family is living a dysfunctional relationship dynamic which necessarily involves mental, emotional and spiritual abuse.
This was my life for over 16 years. Shunning birth control resulted in seven children, who we homeschooled and sheltered from “godless society.” But these days, I think Christian fundamentalism is just as bizarre as you do. After deconverting, I started a blog, No Longer Quivering, as a way to process my Quiverfull life and try to understand how I’d come to embrace such a fanatical lifestyle. Over time, NLQ has grown into a movement of women escaping and healing from spiritual abuse. I’ve met many people whose lives and families have been devastated by this ideology, and the stories they tell are heartbreaking.
You may well ask at this point, how many of these will you be posting examples from? I’m asking the same thing myself right now. I’m thinking, until I feel the guilt from ever having written this piece is at least evenly leavened. Given my tendency to self-abuse, that might be a good long while.
I remember when this happened pretty vividly, pretty much the same way I thought I remembered the events in Jonestown, Guyana. Thought I remembered them and still wrote this stupid fucking article.
The most damning thing about this particular post is this; I wrote it at the time with the knowledge that the circles I was moving in were highly correlated with all the warning signs of cult behavior, and I refused to acknowledge it. I did not want my beliefs to be challenged. I wanted so fervently to be proven right about everything libertarians had been saying since libertarianism was founded in the 70’s. But most of it is bullshit, has always been bullshit.
The parts that aren’t bullshit? They are irrelevant due to the nature of power and the political systems none of us like but are stuck with anyway. If only we could agree on where to go from where we are now, we could fix most of the broken shit in the current system tomorrow. Too bad everyone is too busy screaming with their ears plugged to notice that no one is listening anymore.
But the harder subject to broach is, the subject of dysfunctional families and their effect on the children of those families. Dysfunctional families like my family was. Mercifully our family never included the sexual side of abusive relationships, but pretty much everything short of that were things that simply did not work in my family when I was growing up. The fact that my family experiences were so bad combined with the fact that the philosophy and politics I had adopted were deeply delusional made for a perfect storm of bad information that made me believe that making fun of mental health workers trying to deal with real trauma would be amusing to anyone else aside from me. For that I do sincerely apologize.