Unhooked Generation – The Book

Originally published in my MySpace Blog, 2/10/2008.

Unhooked Generation by Jillian Straus

The woman that wrote the book was not a clinical psychologist; she was only a woman in her 30’s wondering why it seemed so much more difficult for people in our generation to find lasting love.  She traveled to different locations around the U.S. to interview random people that responded to her ads posted in free newspapers and Craigslist.  Some points really hit home for me.

1.  Do you make a list?  I know a man who has listed 42 qualities his future partner must have.  I even have a list myself, though it doesn’t go up to 42:  must pay his own bills and not try to steal my money; must bathe at least daily; must brush teeth 1+ times a day; must be nice to me.  Some standards are reasonable, I think, and some absolutely no one can live up to.  I don’t even think I can list 42 qualities about myself, so how do I know if I fit that manifest my friend created?  Oh, and once you have your grocery list made, then you can go shopping on eHarmony or Match or Plenty of Fish to make your selection.  Like a piece of meat.  What ends up happening is that we reject everything, which leads to….

2.  Why suffer?  If I don’t like something, or if it isn’t working for me, why not just cut it off and be done with it instead of beating myself up trying to make it work?  Relationships ARE work.  Or at least they require effort.  Expecting for things to just fall into place is unrealistic, and bailing is the easy way out.  I have absolutely been quick to jump ship but can honestly say that I’ve never regretted doing so.  I just don’t put up with any juvenile bullshit anymore.  Of course, the “why suffer” mentality is one of the main reasons that couples get divorced; think about it:  how many marriages do you know about that have lasted for less than a year?  I can think of 7 of my friends right at this moment.  Is it that they’re picking the wrong partners, or just giving up too easily?

3.   Fear of making the wrong choice:  let’s talk about the guy with the 42 requirements again.  He repeatedly says that he never wants to commit, because what if the next person that comes along is a better match for him?  He’ll never, ever be happy, I guarantee you that.

4.  Never allowing yourself to connect because you are afraid to fail at marriage.  Wow, this is a big one – I have always said that if I’m crazy enough to get married, it will be only once.  Half of the interviewees said they were afraid of failing by not living up to the seemingly seamless relationship their parents have, or failing by turning out just like their divorced parents.  I’m afraid of the second one myself.  No one goes into a relationship thinking that it’s going to fail, but it’s another thing to think that you’re not even going to allow someone to get close so there is no opportunity to fail.

5.  Losing our gender identities.  Yes, women’s lib was a blessing, I will bang the drum about that one all day long.  It’s what allows me to be a single woman in my 30’s [now 40’s] with a career and the ability to stand on my own.  But……..I could really use a mate who knows how to work on cars.  And by the way, can he also like going to art museums, and cry at mushy movies too?  But I don’t want him to open the freaking door for me, I have two arms and two legs and can manage on my own.  But can he still pay for dinner, because he’s the man?  I can say that I want a really strong, stoic man who can build a house but still tear up over “Love, Actually”, but how realistic is that?  It’s a bunch of mixed messages that lead to misunderstanding because one person gets pissed off that the other one didn’t pick up the check.  It is every man for himself, I tell ya – because there are no boundaries on the gender roles anymore.  Better brush up on your communication skills.

6.  Technology.  How easy is it to erase someone from your cell phone, and therefore your life?  How easy is it to send e-mails and instant messages, but never talk on the phone or see each other face to face?  We’re definitely disconnected and our spelling skills are becoming atrocious – because we are lazy.  And scared.

This is one of the few relationship/self-help books that I’ve read from cover to cover – usually I get bored pretty easily or can’t relate to what the message is.  This one is fascinating because I have so many single friends, just like me, wondering what in the hell is going on.  If you recognize any of these factors within yourself, this may be an interesting read for you too.
[Disclaimer: Since it’s now 10 years old, some references are going to be outdated, but the ideas are still relevant.]

 

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If Nothing Else, There Is Hope

Written as a MySpace blog post 10.5 years ago, approximately 3 years before I became seriously ill with the disease that took me down and now has me bedridden. I can’t believe it’s been a decade already.

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The Legacy of Hope   6/2/07

 

When I went to the Chandler library to cruise for movies to check out for the weekend, the selections were pretty slim.  The Poirot series that usually appears on PBS didn’t hold any appeal, and “Show Boat” wasn’t looking any better.  I picked up a documentary called “Legacy,” about a multi-generational family of single moms trying to escape the inner city projects of Chicago.

The narration is provided by one of the teenage girls who lives with her grandmother, mother, aunt, six cousins and four siblings.  Within the first 10 minutes of the film and after the grandmother gives her first interview about living in the projects, one of the nephews – the one that showed the most academic promise and stability, and was looked up to by family and neighbors alike – was shot dead in the street.  The filmmaker chose to follow this family for a total of five years after this devastating murder, which included the boy’s mother joining and completing her 5th addiction treatment program, the narrator’s mother getting a stable job after being a welfare recipient since the age of 16, and the grandmother finally qualifying for her own house after a generous donation from an area businessman who saw the news story of the boy being shot.  The narrator was the first in her family to complete a high school education and receive her diploma.

This was a difficult story on many levels.  It is not dissimilar to watching episodes of “Intervention” on A&E.  Nearly every person of my immediate and extended family is or was an addict; I saw and learned things that no child should.  Every person in my father’s family with the exception of my uncle died young, including my father.  This month will also mark the violent death 12 years ago [as of 2007] of my aunt at the hands of her boyfriend.

Poverty was also a strong factor in my childhood years.  My mother nearly died when I was five after she contracted a bacterial infection, and was bedridden for three months.  Add that to the strain of my own medical bills, with my terrible asthma attacks, allergies, and numerous bouts of pneumonia and bronchitis….and no health insurance.  “Preventative care” was impossible to consider.  We stood in line for milk and cheese.  We were also issued these awful frozen fish portions, which were breaded fillets of cod with a hunk of cheese wrapped in as well.  Luckily an uncle was a manager at General Mills and would give us test samples of various foods that they were developing to mass market.  It was a treat when we once got “Bonkers” – if you remember those, they were rolls of peanut butter with rice crispies and chocolate chips on the outside.  Mostly, though, we got these horrendous breakfast bars – vanilla, strawberry, and chocolate – that had the taste of chalk and the consistency of a doorstop.  We ate them because we had to.  [It is no mystery that impoverished people are overweight because the least expensive food is the most fattening and unhealthiest fare you can conjure up.]

One Christmas there was no money for presents.  My mom contacted a local charity that gave us $14 each to spend on gifts, took us shopping, and had a wrapping party afterwards.  Mom still had a sense of humor about it – somehow she convinced me to tell her what I got her, saying “Oh, I’ll forget, I promise.  Just whisper it in my ear.”  Of course I told her.

It is also no mystery that being poor is stressful, humiliating and limiting. It is easy to say “Why don’t they just ___________ ?”.  Right now, as a nation in general, we have a very them-vs.-us mentality; every man for himself. If you are lucky enough to have grown up in a household that never really had to struggle to survive, it is much more difficult for you to understand how this cycle of poverty continues through generations.  But instead of saying “Why don’t they ________?”, why don’t you ___________ to help?  Because it’s their problem, not yours.  I’m not saying that we have to give $10 to the people with signs at the end of freeway exit ramps.  Can’t we lend a hand before it gets to that point?  It may not be you or your family right now, but it could be in the future.  Medical expenses alone are becoming outrageous, even for those covered under company policies, and one major illness could be financially devastating.  Half of all bankruptcies filed are attributed to medical bills.  For some reason, we as a society have associated medical bills with outright laziness, when it couldn’t be further from the truth.

There were elements in this film that I could not relate to.  My extended family never bonded to get through the hard times.  When my aunt was killed, my father had to admit to the detectives that he “never really socialized with her” and didn’t know her boyfriend was violent.  Her death was heartbreaking, but instead of offering each other support, fights broke out over stupid things like who would get her dresser and bed.

These women in the documentary also had strong faith in God, which was never a part of my upbringing.  Hearing “God will get us through this” and “by the grace of God” was like they were speaking in tongues to me.  Faith is not something I practice.  Even if we’re talking about people in general, or work, or good health, or anything for that matter, I never sit back and say “I have faith”.  Instead, I have hard work and critical thinking skills.  If I don’t do for myself, I have no business sitting back and waiting for something, or someone, to take care of everything for me. 

Yet, there is still the legacy of hope.  We need to be reminded that despite our circumstances, we can rise above with dignity and flourish.  You or I may have been in a bad place 10, 20, 25 years ago, but that doesn’t mean we have to be there now.  Good deeds should be handed out to strangers, friends and family alike – you may need their help one day.

My mom has recently started worrying that she made too many mistakes and bad decisions when raising my sister and I.  It’s quite a time delay, since we are both in our mid-thirties and turned out pretty straight.  I don’t hold anything against her.  She also taught us love and affection, dignity, and the joy of survival. 

Invading MySpace

Remember MySpace? I kept a blog up there too. In fact, I also dated some men through MySpace. The following is a story about one of those men, and knowing what I know now, he has exactly what I have: mast cell activation syndrome. I have thought about him often only because I wonder if he has actually been able to find the correct and comprehensive medical care. But hands down, he is a fucking lunatic. There is no way I could be around him for even five minutes ever again.
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I debated about posting these, but the whole incident is classically surreal, like when the main character in “Swingers” calls a girl named Nicki that he just met at a club that night.

I went out with this guy for one date in November of 2005, where we met up at a bar and he was too cheap to even buy me a drink after he asked me what I was having (the woman sitting next to me was so pissed, SHE bought me a drink).  Afterwards I drove him to his apartment because he had taken a cab, and we ended up working on some of his original music together. While we were there, he got into a screaming match over the phone with his mother, and they were calling back and forth and hanging up on each other, and he was stomping and slamming doors.  Some other background:  he own(ed) his own business that manufactures DVDs and CDs.  He also has horrendous food allergies where if he deviates from eating six specific foods he can go into anaphylaxis, much like most of us with this disease.

We talked on the phone the Monday after that date, and I timed him talking non-stop about himself for 20 minutes.  He repeatedly said that he wanted to have children, so after the sixth time of hearing that I stated that I probably wasn’t the person to do that for him and tried to explain why (this was before I had my hysterectomy). He blew up.  He went on for another 10 minutes solid and accused me of criticizing him.  I told him I was getting frustrated because he wouldn’t let me finish my sentences, then he said I was being hurtful because I was accusing him of being rude, and he was completely insulted.  Anyway, after he hung up on me, I found this string of e-mails sent overnight.  I have blanked out his name for semi-privacy and included the times for your reading pleasure (all of his typing mistakes were left in):

11:58 pm:
Chelsea!

You know, you opened up the other night, and I was very, very, kind about it. I opened up tonight to you and you were VERY tough. Very not fair.

The items I discussed are not definite ever. But you had pre-ideas and canned my personally as to what I felt about you the other day and what you disapproved of me tonight. I had the HIGHEST FEELINGS, THEN TONIGHT YOU CAN MY FEELINGS. Hope your happy. If you want to call, go ahead. I don’t care if we are exact or not, but the words were very harsh.

12:09 am:
Chelsea,

I am only willing to love. Email never does justice. We just hit it off, something was up the other night, just want the one I met that night. Sincerely,
P

3:04 am:
[blank]

3:08 am:
I thought your were happy I was in to you. So there are differences, I was very insulted because you refused them last night. I can’t believe you would immediately be that way. We had a nice night the other day. You told me you had a great time. Something I’m missing?
P

3:20 am:
Not fair.

The decrisption of the “PERFECT” man was wrong. If that is exactyly what you want, you tell me, and tell me upfront and all! NO ONE EVER CUTS ME DOWN

I told you about the possibilitiles, and how I actually can handle the differences. But I still can handle the differences. And let my partner know.

3:23 am:
Not fair.

The decrisption of the “PERFECT” man was wrong. If that is exactyly what you want, you tell me, and tell me upfront and all! NO ONE EVER CUTS ME DOWN because I have the ability to raise a kid. Anyone who does cuts them self down. I just want to know who can.

I told you about the possibilitiles, and how I actually can handle the differences. But I still can handle the differences. And let my partner know. Kids are tough, but not 100fficial in a new relationship. But anyone who cuts me down about that…I can be the best dad.

I just only wanted to meet and go out. With no big deal.

Sincerely.

P

3:50 am:
Chealseal

OK. here it goes. I really like talking and hanigng with you. I almost died this weekend. I’m sorry.
I lost almost 10 pounds. I;m not having fun. I am just doing what I can. It is too much too handle by myself. I really like you, you just caught me in a time where I may or maynot have much time. PLEASE FORGIVE.

3:55 am:
Chelsea,

Please hang on. I did not mean to hang up.

It is hard to be myself with what is going on.

LOL…I’d really like a pizza! Can’t have it though.

All the things on the phone, just take them as friendly. You are great. Just know that.

Sincerely,

4:00 am (titled “RUDE”):
yes,, me,

I really hope you call me. I am not very happy with my self. It is hard, just please forgive and talk with me again. Sincerly,

P

5:22 am:
Chelsea.

I was about to Bankrutcy the business. I am not mysellf. You know, you are beautiful. I have words on the phone, and email. But they are just my venting that I might/might not loose everything I worked for. I am not my self at the moment. I apologize completely. I have a funny habbit of calling my friends in the middle of the night if I drink a bit. You caught me in a time of my life where everything is on the line.

I am totally sorry for anything I said wrong. I am really stressed. And, maybe wrong. I am sorry. I had the best time talking with you. You just met a guy who is “got it together” on the outside, but not on the inside.

I have done my best, but, I have now to realize the way it is.

Sincerely,

P

PS – anything I said in a voicemail is just me venting. I hope to hear from you, venting or what.

5:32 am:
Chelsea,

I had a rough night, obviously. But, just so you know, and whether you contact me again or not, you are very pretty. Your eyes and your smile are the best thing.

I had a really bad weekend. My food allergy thing is lethal. No one understands. My mom, well, she took about 5 phone calls to calm down and realize, and help me find a potential solution.

I am not myself. I just want to run the bus and play guitar/sing, and even sing with you.

I may have blown it. My bad. Then it is my fault and I must deal with it. I have these stupid health things that make me not myself. But if i was out of line, I apologize. Very sorry. Most Sincerely, and just not myself tonight, P

This was posted after I went to work, 9:05 am:
Chelsea,

Hi. In summary, I went overboard last night.

When I asked you if you were real, I was meaning a real person. I have been screwed over the last few times I met someone.

You are not only real, but again, have the prettiest eyes and smile. The first thing I noticed. So, anyway, I had one too many last night, and will NOT DO THAT again. I was very emotional and you just happened to be there.

So, I really like you. And everything you said was fine. I really enjoy looking at you the way you are. And/or the way I don’t yet know, but either way, you are good with me. Your eyes and smile are fantastic.

P. has some inside issues obviously of stress, probably from the business. They come out once in a while. I just need someone to slap me in the face if they come out again. Because I do not want them around. I just want me and….well…you….at least when I’m talking with you.

So, please forgive, I am just a human. I take things too personally sometimes, but understand.

So call me please. Anything wrong I did I apologize, I just had a bad night after being very sick for three straight days. I lost 6 pounds since you saw me. That bad. I was in a lot of pain.

But anyway, I am here. Most very sincerely,

P.

After much time and consideration, this is how I replied:
P,
I remember trying to explain the reasons why I have decided not to bear or raise children, and during the first point (of three) I was attempting to make, you interrupted me to talk about you again.  I remember thinking “What in the world do his allergic reactions have to do with MY ability to bear and birth children???”, but I let you continue talking.  Then somehow you turned it into me criticizing you for wanting to be a daddy, when no words of criticism or judgment (and in fact no words at all) came out of my mouth.  Then you got pissed because I said I was getting frustrated about not being able to finish my sentences.  You ended the call by talking for another 10 minutes non-stop and then saying “Maybe we’ll talk again, have a nice life, talk to you soon” and proceeded to hang up on me.

To top it all off, when I wake up this morning and check my e-mails, I have ELEVEN messages from you that are barely coherent and alternatingly rude, apologetic and complementary.

If ever there was a time that you needed someone special in your life, it is now.  However:  no matter how sick you are, no matter how drunk you are and no matter how stressed you are, if you treat me like crap, I’m not going to stick around.  I don’t let anyone else treat me this way, and I’m not going to start with you.

I have a hell of a lot more to say, but let’s just leave it at agreeing not to contact each other again.

Super Blood Moon Drawing Blood

In 1993 to 1995, I worked at a regional hospital in the admissions area, and we always knew when it was a full moon. On any given day we would have one or two women during regular business hours coming in (not through the ER unless it was after hours) in full labor. When the full moon hit, the number always jumped up to about nine. If we ever forgot or wondered for a second, we checked the calendar and then it would click: oh yeah, the full moon. Every time. Don’t ever doubt that the moon has a big influence on happenings on Earth, and it’s not just tides and births.

I was at a social gathering this Tuesday the 30th of January. There were only six of us, but I only knew two others and three were strangers. One person came from her workplace and was wearing her work uniform and I was familiar with the clinic where she works – it’s quite large, and I used to have the majority of my doctors there. One of the young women sitting next to me piped up and said, “Oh, I used to work there, in ophthalmology!”

I immediately tensed up. “Do you mean you used to work with Dr. X?”

“Yes! I loved working with him, he was so laid back,” she said.

Now I’m no good when it comes to putting out a poker face. I also didn’t feel like playing Minnesota nice either. I said, “He made my life a living hell. He was the first doctor I saw there, and he said that my condition was psychogenic [meaning it is psychosomatic], and all of the doctors after that saw what he wrote so they wrote the same thing in my chart, and now no one will treat me. I actually have scans showing that my brain has collapsed and I’ve had a clogged shunt for almost three years.”

She nodded and said cheerfully, “Well, yeah, he actually writes that it’s psychosomatic or psychogenic in almost everyone’s file. But he’s nice to work for as a boss, he doesn’t get crabby often.”

When I say she was young, I mean early to mid-20’s. She wasn’t affected at all by me telling her that his notes basically ruined my life and chances for getting treated properly. I also haven’t had any money (including and especially disability) coming in for three years. I also wasn’t successful in filing a complaint with the Minnesota Board of Health – they said I didn’t have sufficient evidence. But now I’m wondering if I’m the only one who has complained about what he put in my chart because it was so obviously wrong, and I backed it up with 100+ pages of medical records.

This Dr. X is Harvard-educated, but you know, even Harvard has to have someone who is the shittiest out of the bunch. I’m going to go out on a limb and say he’s the one.

This is also why it’s important to stay diligent about your own care. I realize that anger makes people uncomfortable, but in my case, it’s legitimate. 

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When I returned home from this gathering, I was taking my nighttime meds and catching up with my emails, and I saw one pop up in my inbox. I dreaded opening it. It was from a researcher I had written to a week ago to give her an update on my situation. I had met her in 2016 at the hydrocephalus conference that just happened to be in Minneapolis. I wasn’t sure that I could handle more disappointment, but after delaying it for a bit, I braced myself and checked her reply.

I had explained that I was diagnosed with mast cell activation syndrome, and that my Phoenix neurosurgeon had noted that my dura was extra tough when he started doing surgeries in my head rather than my back, so my theory was that my CSF couldn’t drain properly and that it was probably because of the mast cell degranulation. I already know the shunt failures are because of the mast cell action.

Her reply was very encouraging. She thought that I was absolutely on the right track, and she wants to work me into her research. A lot of it already revolves around inflammation; I consistently have astronomical platelet counts (that have already been checked via a bone marrow biopsy), but she hasn’t studied mast cells and I would be the perfect candidate since I had problems before the shunts and with the shunts.

I tend to be a pragmatic person, which sometimes leads to awkwardness in emotional situations. But I’m more than happy to sacrifice my body at the altar of science if it means that some knowledge is gained and others are helped. I’ve become a broken record in the online MCAS groups because I’ve talked about the CSF and shunt issues so many times, but every time I do, more people step forward and say that they have had some mysterious problems too, even if they are not exactly like mine. For a long time doctors have said that only fat, middle-aged women have pseudotumor cerebri/ideopathic intracranial hypertension, but I’m beginning to suspect that mast cell activation syndrome might be playing a bigger part than they realize because of how many people in the groups have stepped forward. 

So after this low low and this high high, the super blue blood moon arrived in the early morning hours Wednesday. The moon has ruled my Earth. I feel a little bit lighter now.

Ladies First

I grew up in Minnesota, and I currently live in Minnesota, though there was a big break of 20 years where I lived and voted in other states. Still, one of the bright and shining lights in being in this horrible position of having to burn through all of my personal savings and deplete my entire 401k plan just to live until I find out my fate in a much-delayed disability hearing is that from my mayoral candidate to my state representative to my House and Senate candidates, everyone is a Democrat.

And the two Senators from Minnesota are very popular; Amy Klobuchar is a champion for women and often works across the aisle to find common ground so that bills don’t stall completely. The most recent bill (embarrassingly) is the one outlining what needs to be done in the case of sexual harassment – because nothing has been in place or updated for more than 50 years. Amy Klobuchar’s office is “following” my disability case, though for the time being, there is not much they can do to speed the process to the hearing because I’m technically not completely down to zero dollars (though I’m close) and I’m not close to death at the moment. Things have changed quite a bit since that concept of approaching your senators and representatives for help was introduced.

The other, Al Franken, often makes the news because of his relentless and sarcastic grilling during committee hearings. As recently as Wednesday night, after another video was posted on Twitter and Facebook, people were calling for him to run for president in 2020 because of his no-nonsense approach and seeming transparency in all areas professional and personal has made him the darling of many who tire of the current shitgibbon in office who picks fights with other world leaders via Twitter.

Of course, everything flipped on Thursday morning when it was revealed that Al forcefully kissed a woman after she refused him, then pretended to grope her while she was sleeping.

Al is actually a friend of friends, so I’m going to start there. I’m going to imagine knowing him for a few decades as someone who went to his house, or he came to mine, watched his kids grow up and he watched mine get bigger, and maybe we talked about how I finally got diagnosed with this really sucky disease that has no cure and not a great prognosis – because that is what happened to my friends. And it seems like he genuinely cares and wants everyone to have a better life.

My friends were hurt and disappointed. It’s difficult to wrap your head around having something like this hit the news and it touches every corner of your life. How do you explain it to children, who also see it on the news and hear adults talk about it? How do you bear the burden of close people being really disappointed, not to mention millions of strangers? How do you feel safe around someone who says that they respect boundaries and is a champion for women but then demonstrates the opposite?

Al even co-sponsored a sexual assault bill; it addresses how first responders are trained in handling rape victims and how to interview them. Abby Honold had to fight her rapist for two years in court in order to get a six-year sentence for her attacker. As soon as the story broke regarding Al’s behavior, Abby contacted his staff and requested that he immediately remove himself from the bill, and he agreed.

I tried to talk about this situation with a man who I generally see as supportive to women. When the report came out and was immediately confirmed and an apology was issued, I was extremely disappointed too. I admit I don’t personally know Al, but fuck, I’m a woman. I’m a woman who has worked with men. I’m a woman who has been out in public. I’m a woman who has been groped without permission. I’m a woman who has been kissed without permission. I’m a woman who has faked pleasure and orgasms in order to get away from someone as quickly as possible because I have recognized danger. The man that I tried to talk to about this knows this, because we have talked about it over and over.

But this time, he told me to shut up. He told me that the woman who reported it accepted Al’s apology, and that’s all that is needed, and my opinion doesn’t matter. Then he said he was sorry he got into the subject with me. Then he said he had bigger things to worry about. Then he went into these big, long speeches about how what Al did wasn’t as bad as what Roy Moore did, and it was before he was a senator, so he should just be left alone. This entire time he was spouting off, I didn’t say anything. There wasn’t anything I could have said that he would have been receptive to. He was in Lecturing Middle-Aged Privileged White Male mode. 

Why do I take it so personally? Just last week I had been talking about adding Al in on my disability case in trying to get it pushed through faster because my funds are running so low, but my instincts kept holding me back. I don’t know why. Now I’m afraid to ask my elected official to help me just because I have boobs and he might want to feel me up in return for helping me. Why does everything have to have a fucking cost? Why do I have to whore myself out? I truly don’t think that men understand just how much of a betrayal this is, when we confirm that yet another person has abused their power.

A man saw fit to tell me that my opinion didn’t matter, then he went on to tell me all about his – about men forcing themselves on women, and his conclusion was that it wasn’t that bad and it could have been worse. Another man posted his own conclusions, saying that as long as love and dating have been around, “unwanted feelings” have been a part of the whole thing, and we should just deal with it like adults. Here’s the thing, though: Al and his accuser never dated. Ever. And for part of it, she was asleep. I realize that every man has a “wake me up with a blowjob” fantasy, but when a woman is in full fatigue gear and wearing a flak jacket and helmet and is in a deep sleep sitting up on a plane surrounded by men, exhausted, she’s probably not fantasizing about how she can fulfill their high school porn dreams. The same can be said about my asshole ex-boyfriends who didn’t believe me when I would get pissed about them feeling me up in the grocery store when I was trying to take care of a long list and they were contributing absolutely nothing of value, including money and effort.

I really, truly wish that men would put their dicks down and listen.

Suffering For Art

 


Yesterday I posted this article on my Facebook page, indicating there are certain entertainers I won’t support even on Netflix/Hulu/Amazon because they still receive royalties. I won’t even check out their movies from the library.

I was subjected to “Annie Hall” my freshman year in college. Woody Allen is a whiny fuckhead criminal, and I don’t understand why people, especially women, keep clamoring to work with him. Who does he remind me of? The abusive guy who doesn’t live downstairs anymore. I have paid attention to the trailers of Woody’s subsequent films, and quite frankly, they have nothing to offer beyond what we have already seen. Who keeps saying he’s a genius? Other men who want to bang underage girls.

One of my friends agonized over the fact that “great artists” might be shitty people. And by “shitty people,” he means that they probably rape and molest women and/or girls and/or boys. But, by god, look at their art! What would we miss out on if they didn’t do all of those things to other people! So the conclusion that this friend came to is that we should still support and admire the art – works by Salinger, Brando, Led Zeppelin, The Doors, Mailer, Eliot, the list goes on.

My answer is no. I’ve never seen any of The Godfather movies. I’ve never lingered on a Pollack painting. Never read Salinger. When I find out that someone is a douchebag, I drop them like a hot mess. I will never again laugh or relate to a Cosby joke. He drugged women to fuck them, and then, you know, blamed them or tried to gaslight them.

Another friend who jumped in on the conversation jokingly said that he would support the art if he could pirate the material rather than outright buy it. But he would still miss the art too much if he had to give it up because he loved it too much; he was a huge John Lennon fan, and that outweighed any bad behavior.

What is especially disturbing is that the second friend wrote up a little speech during the first wave of #MeToo posts, saying he became aware of how unsafe women feel after a female friend asked, “But is it safe for me to go there by myself?” He expected and received a lot of accolades. But he and the other guy were pissed at me for this post about not supporting assholes and criminals. I mean, they both apologized for offending me, but only after speeches about why I shouldn’t be mad. Don’t be mad, brah. We’re just flawed and we don’t want to stop bad behavior if it results in good art.

We all attended the arts high school together. I’m always surprised and then disappointed when I think that we’ve all evolved at the same rate, because we had this really great experience, and I’m proven wrong. I’m a harpy now. Why can’t I be all cool about loving the art and understand that men will be men and suffer and need salvation – but know until then, they are going to beat and rape women and children?

I’m just wondering when I stopped deserving to be safe. Is it because I’m an artist and I should expect violence from other artists for the sake of art? Is it because I’m disabled and I should be thankful for whatever comes my way? Where is the motherfucking disconnect?

I’d much rather throw my money and my spirit at artists who aren’t shitty people. For instance, I like Sara Bareillas. I’m pretty sure we’re not going to be reading any shockers about her. I also like X Ambassadors. Have you heard about their partnership with No Barriers for the Renegade Scholarship Fund? “The organization helps people embark on a quest to contribute their absolute best to the world. From middle and high school students, to adults with disabilities including wounded veterans, the organization serves people of all backgrounds and abilities united by a common desire to live purposefully despite the barriers in our way.” And since I live across the street from the art gallery my sister manages, there is an endless stream of local visual artists I get to talk to and take pictures of their goods to post online for social media.

There are so many opportunities to support positive artists, both living and dead, that I don’t feel the need to give my attention or money to those who destroy others. I don’t accept the status quo. I don’t go along with the idea that I should like them or their art just because they are “classic” or “geniuses.” Now that we have the internet, we have access to so much more material. Besides, last time I checked, The Doors aren’t putting out any new songs.

A Few Of My Favorite Things

I love sharing my favorite things – especially if they promote the use of less chemicals. If you get the chance, I highly recommending finding the movie “Chemerical” – as of 10/22/2017, it’s included on Amazon Prime video.

1. Make your own all-surface cleaner for pennies! 1/2 c. white vinegar, 1/2 c. rubbing alcohol (I prefer 91%), 2 c. water. That’s it! Blank spray bottles can be found in most aisles near cleaning supplies – not cosmetics. Those little colored spray bottles are terrible.

2. Make your own floor cleaner for pennies! 1/2 c. white vinegar, 1/2 c. alcohol, 2 c. water, 5 drops dish soap. That’s it! If it’s not enough volume, double it.

3. Deodorant/Antiperspirant: I was afraid that I wouldn’t find something natural that wouldn’t work for me, because I have HS and other issues and am very self-conscious. However, I took the leap and tried something from Etsy. Wow! I specifically went for the clay option to go for as much protection as possible. Sometimes I have to go in with my fingertips and make sure it’s spread evenly, but c’mon, people, it’s just skin! And it works! And I don’t break out in terrible hives, and the smell isn’t overwhelming! Aluminum-free antiperspirant ByJenJen

4. Cosmetics: I don’t buy many commercial cosmetics anymore. Do you know why you have to throw them out every 6 months? Because you put your makeup brush in your eye, and then you put your makeup brush in the makeup, then you put your makeup brush in your eye, then you put your makeup brush in the makeup…and you make bacteria soup. So with Aromaleigh cosmetics, everything comes in a little sifter jar. I just tap out what I want to use in the lid. Now that I’m getting (gasp!) old, I can also get matte colors instead of pearle – matte doesn’t show the creases as much. They also do a lot of face shades in warm, neutral and cool. And you can BUY SAMPLES of pretty much everything. I mean seriously, you can have a lot of fun. (Backup go-to: Meow Cosmetics. Same concept.)

5. Perfume: For the love of all that is holy, stop spraying that shit on. Stop it. It’s full of neurotoxins and stuff that makes men grow boobs and women grow chin hairs and stop being able to have babies altogether. You are the reason why girls are getting their periods at age 8. Perfume is in dish soap, laundry soap, hair spray, lip gloss, lotion, under eye cream, antiperspirant, and then you want to spray extra chemicals on your “pulse points.” You’re lucky you still have a pulse! Instead, go to Black Phoenix Alchemy Lab and do some serious shopping. It’s a little overwhelming at first, because they like to include poetry with their flavors. Just skip to the bottom and read which flavors are included. I also strongly suggest going to the directory and specifically looking for scents that you are familiar with or want to try, and they will list which products include those scents. I am allergic to patchouli and lavender, so I have to make sure I avoid anything that has either of those in a list. REMEMBER: ANYONE CAN BE ALLERGIC TO ANY OR ALL SCENTS, “NATURAL” OR SYNTHETIC.

6. Laundry Booster: Biokleen “Bleach” Oxygen Plus – It’s not really a bleach. It works like OxyClean but it’s got enzymes and grapefruit seed extract.

7. Laundry Powder: I tried to make my own – you can do 2 c. Borax, 2 c. washing soda and 1 c. grated Fels Naptha soap, but the fumes from the grated soap created problems for me, even with a mask on. So I started purchasing Biokleen products. I recommend either the powders or the liquids, they end up being very reasonably priced.

8. Dryer sheets: Guess what? Vinegar saves the day again! Moisten a washcloth with vinegar and pop it in the dryer with the load. You will not smell funky, don’t stress about that.

9. Toilet Bowl Cleaner: Yes, it’s Biokleen again. The Soy Toilet Cleaner is worth its weight in gold. I also use it to scrub my sink and tub if I don’t want to use vinegar and baking soda, or Borax. (Side note: Vinegar is anti-fungal – just think about how long you can keep that jar of pickles without mold growing.)

10. Oily skincare: I’m 43 and I still have the skin of a 13-year-old. It’s specifically about inflammation with me. My favorite products include Desert Essence Thoroughly Clean Face Wash (seriously cheap too!), Herbivore Blue Clay Mask and Herbivore Bamboo Charcoal Deep Cleanse Detoxifying Soap Bar (I got these as gifts – I love my friends!).

11. Aveeno Daily Moisturizing Lotion: I have bottles of this scattered around my tiny apartment and carry a travel size in my purse. It’s a great commercial brand that has low toxicity according to the Skin Deep Environmental Working Group Database. Are you familiar? You should be! It should be your bible! Here’s the Aveeno Lotion page.

And my favorite things wouldn’t be complete without my favorite actual things, as in the things I have reviewed, and yes, STILL use!

12. I still hang with my Oska Pulse. I stopped getting injections in my shoulder in May of 2017 after a full year, so I rely solely on my Oska Pulse to get me through the tough spots. I highly encourage anyone who has any type of pain to check it out and use it heavily. I swear it won’t cause you to grow an extra limb anywhere.

13. I use my Neo 185 Luxe Bidet every single day. Every. Single. Day.

14. Mo’s Dream Cream for pain – yes, Virginia, it still smells like hot chocolate and sledding parties wrapped up in your burrito dreams. I still use it on the regular and it has a permanent place on my bedside table.

Take A Left At The Last Resort

There is a young woman who lives in my current city who has had over 140 shunt-related surgeries since birth, and she’s 20 years old now. She doesn’t have the same condition as me – no one does. But I was lucky enough to meet her and her mom at the hydrocephalus conference last year and I’ve been following her progress. Within the last week she took a turn for the worse according to the updates her mom posts for everyone; this patient is allergic to nearly all antibiotics that have been created, and she’s developed an infection.

It’s especially dangerous because our shunts provide a direct path for bacteria to travel to our brains. Our shared challenge is that neither of us can get a shunt that is coated in antibiotics because we’re so allergic to a wide spectrum of them that it could kill us.

Doctors in this city had suggested that the patient could get a treatment that would somehow desensitize her to this wide spectrum of antibiotics in a city that is about an hour and a half from where we live. Her mom made the appointment and asked lots of questions, and she was told that it would take about six hours in the clinic, and her daughter would be cured. She started to have some nagging doubts despite being referred with confidence by her daughter’s trusted neurosurgeon. Doctors across the country were too scared to do this in a hospital ICU, but this doctor in a city of 65,000 could do it in 6 hours in a clinic? Her mom consulted with doctors in Boston as well as Johns Hopkins and cancelled the appointment. Everyone was of the opinion that her daughter would simply die at the clinic. She already can’t get another surgery unless she’s near death and unresponsive because her scalp is the consistency of tissue paper from all of the surgeries she’s had.

But now what? Cancelling the appointment may have saved her life, but no one really has a good idea for the next step.

I get that question all of the time: What’s next? If. I. Only. Fucking. Knew.

First: Everyone asks me what I have. I’m pretty sure I figured it out, and the doctors that I have most recently presented the theory to have agreed that it’s a solid theory, but there’s no real way to confirm it (though my Phoenix neurosurgeon suggested exploratory brain surgery in 2013 when he discovered my toughened membranes in my brain – no joke). So I still have to say that the doctors don’t really know (but I’m never wrong).

Second: After I say that the doctors can’t be sure, the response I get is, “Yeah, but what is it called?” So………………I don’t know is called “I don’t know.”

Third: The next question is always, “Is this going to kill you?” Now, I’m going to be Captain Obvious here. If no one has ever seen this before, and we don’t know what it’s called, then how could I possibly know if it’s going to kill me? My educated guess is that if my scar tissue continues to grow and take over my brain, I’m fucked. The tissue around the shunt and scar tissue that is turning gelatinous isn’t going to reverse; it will always stay that way.

What would you do if you were the 20-year-old patient and allergic to all but one of the antibiotics available in the U.S., and you had a systemic infection, and you knew that if you took another round, you could lose your ability to take any antibiotics for the rest of your life? And if the infection reached your shunt, you knew it could go straight to your brain and kill you?

What would you do if you had a mystery disease that paralyzed your face, made you walk and talk funny, and stumped over 60 doctors and it took away your life and livelihood? And what would you do if you had almost all of the doctors refuse to take you on as a patient because they don’t understand what is happening or they see no point in trying to help?

 

Moving Past PTSD triggers

PTSD is a many-layered…affliction? phenomenon? illness? hurdle? I’m not even quite sure which adjective I want to insert here. I understand that it’s not a single event. It’s been rolling around and building up like some terrible snowman, and getting the diagnosis was simply the carrot nose and coal smile for me. The healing process has been nearly impossible to initiate because I’m having such a difficult time with finding doctors who will treat me in Minnesota (without writing such things as “Munchausen’s” in my charts); plus from November until the end of July I was dealing with a violent male neighbor who screamed and beat his wife and their cat on a daily basis. After numerous calls to the police department and fighting with the apartment managers – who were trying to force me to move, and were claiming that I was making everything up about the neighbor – the guy suddenly vacated his apartment. My stress level immediately reduced considerably. I’m happy to report that just a few days ago I managed to land a new doctor who is happy to help and cheerful to boot, and he’ll be essential when it comes to trying to control my mast cell activation syndrome issues (except for the brain/neurological problems – I still desperately need a neurologist and neurosurgeon). This does not mean that all of my PTSD symptoms are magically resolved. I wish!
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

ADD . . . and-so-much-more

Do we ever really heal from trauma?
What does “healing” really mean?

© Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
adding to the Habits, Memory, EF, and PTSD Series

Responding to a comment

Right after I published the second part of one of my PTSD Awareness articles, author and blogger Chuck Jackson posted a comment that asked a question I couldn’t  answer at length in the comment format.

Do you ever recover fully from PTSD?

Chuck went on to add some context to his question:

Looking at your list of symptoms (mental and physical), if I was honest with myself, I would still mark yes to over fifty percent.

The majority of the time, I live a happy and enjoyable life. It is only during periods of anxiety or prolonged depression, do these symptoms raise their dirty head.

They are not debilitating, just very annoying.

So, for…

View original post 2,272 more words

I Know You Don’t Mean It

After I told the Go Stand In The Corner guy that I didn’t want to be his fantasy chat friend on Fet, he still tried to draw me in with more messages. So in the vein of Lin-Manuel, no means no means no means no means no…….well, anyway.

[Break for making arrangements to get the compounded medication to control my hives. I have to try one week of pills to see if I’m going to be allergic to the vegetable-based capsule they use for the powder. Total for 14 pills: $38. Not covered by Medicaid.]

Then I get another gem in my FetLife inbox, completely out of the blue, from a guy I’ve never had any contact with before in a town that is about an hour and a half south of Minneapolis:

Hey there beautiful. I just thought I would send you a text and tell you that you’re one great looking woman. In my eyes bald women are beautiful as I am bald myself. I know you say that you have health problems right now but I still wish that we could talk and hopefully meet as I will come to you as long as you let me. You seem like the type of woman that knows what she wants and I’m the type of guy that also knows what I want and that is you. I’m a gentleman that works too much but also enjoys beautiful women As You Are. I’m serious about meeting you as I would like to meet you now today tomorrow Sunday soon as possible as I don’t want no one else to steal you away from me. Give me a shout out if you’re interested in talking and we can go from there.

So, this is what my profile says:

I relocated from Phoenix back to my home state to be closer to family so they can take care of me during a serious health crisis. Feel free to message me but be aware that I cannot do any socializing of any variety right now. Respect my boundaries.

Now, is there anything in there that says, “Except you, guy. You know absolutely nothing about me including whether I even drink coffee but you know you’re going to make me happy for the rest of my life because you want to do dirty things to my bald head.”????