Exhaling

April 10, 2015, was the last day I commuted home from a paying job. It was the last day I was on a dreaded conference call with a bunch of frustrated staff members. It was a Friday, and only three weeks into a contracting job after being laid off from a place where I had worked for over twelve years. I was already nervous about surviving because work had been interrupted by so many shunt surgeries prior to that time, but April 10th was the final straw.

I remember driving home during rush hour and having the familiar “lights out” sensation cloud my vision. I was only working about 8 miles from home, but since it was rush hour, it would take at least 45 minutes, and the darkness squeezed in almost right after I got behind the wheel. It took all my energy to focus on my lane and not crash into anyone else. I don’t even remember how I made it to the hospital after that, which was another 7 miles in the opposite direction. But I remember having to call my boss the next day to tell him that I would never be coming back in; they wouldn’t hold a short contract position indefinitely.

I wasn’t even sure my neurosurgeon would do surgery #10 in less than 4 years at that point. He had already said after #9 back in November that if I failed again, he was not willing to operate. But he did – sort of. He only did half of the surgery. And of course it failed. And then he sent me away, telling me I had to figure out what was the source of the problem, because he wasn’t going to continue doing something that was going to keep failing. It was all being put on me.

I did figure it out. It took me from 2010 to 2017 and 65 doctors to put all of the pieces together, not to mention the fact that I am one person, not even an entire lab or radiology department. I got zero support from the NIH’s Undiagnosed Diseases Network. The Minnesota Board of Health decided not to discipline 3 doctors (among many) who falsified information to get out of treating me. The Mayo Clinic banned me so I wouldn’t hurt their success statistics and change their #1 in the nation status in 21+ areas.

I lost everything: my car, my house, my ability to earn a livable wage, my confidence, my sense of security and self-worth, friendships, independence, and every last penny of my financial reserves. Thank goodness I already lost my hair over 15 years ago because if I had to go through that right now I’d absolutely lose my shit.

After filing three years ago, I finally had my disability hearing on Wednesday the 28th of March. I didn’t know what to expect. My attorney pulled me into a small conference room prior to the hearing and prepped me, telling me that if the judge asked me questions, to not take longer than 15-20 seconds to answer, and to speak up because he was older and may be hard of hearing. I was also told it may go as long as an hour.

But five minutes, and we were done. Long enough to read my name, and say that it was obvious I was disabled and not making anything up. The letters I asked Dr. Afrin and my current immunologist write for me were key for my case and noted in the judgment. The judge also specifically said that the way I was treated by the majority of the 65 doctors was appalling.

What’s next? I have to wait for Social Security to process the judge’s ruling, and then enter my info for payment, and like the Kool-Aid man, all you’ll see is my silhouette – I’m busting outta here. I gave Minnesota a fair shake for three years, but the fact that so many doctors lied in my medical records and refused to treat me has made my decision an easy one. I’ve decided to head back to Arizona where I will pick up again with 8 of the doctors I previously had; only a few will be switched out, including getting in with a neurologist who specializes in MCAS and Ehlers-Danlos. (Minnesota is a great place to be employed as a nurse, because they are paid relatively well, but it’s a horrible place to be a patient, and I’m far from being the only person who feels this way.)

I want to be clear about what this disability status means for me: 1) It doesn’t change any day-to-day abilities that I have. I still have to lay down and rest for the majority of my day, about 20 hours every day. 2) The actual status of disability is not permanent; I’ll be reviewed and my medical records will be combed through every few years by Social Security to make sure my health and abilities haven’t changed. 3) I still have to take the short bus everywhere, especially now since I’ll be making “too much” to get medical assistance (which is more than $0.00). 4) I still can’t get a motorized scooter – do you really want a half-blind person driving one of those??

My prediction is that this is all going to go down by the end of May, but I’m at the mercy of Social Security.

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Missed Opportunities Brought To You By Creeptastic

This is another post from my MySpace days.

The Sick and the Dating:  The Weirdo in Mesa  4/17/07

Back in high school, I had a friend named Rachel who was a plus-sized girl that liked to wear trashy clothes.  She had bleach-fried hair, and wore those day-glo green colored contacts because she wanted her eyes to stand out.  One day we went down to a store on Hennepin Ave. (where all the hookers hang out, if you’re not familiar with Minneapolis) to visit a trashy outfit store, and a guy held the door open.  He said “There you go, Green Eyes” and she said “Oh, they’re not real” and he looked her up and down like she was his next meal and said “I bet the rest of you is”.  Thankfully, I didn’t get his attention – I certainly wasn’t going to pipe up that MY eyes were green naturally.  Sleazeball who hits on teenagers, get thee gone!

I’m telling you this story because I found these postings in the “Missed Opportunities” section of the free alternative paper, Phoenix New Times, and it reminded me of THAT GUY.  You know, the weirdo that you laugh with while he says something really disgusting and overt, and you’re planning your escape.  This is the same guy posting these ads.  They are all in Mesa, and he keeps imagining these hot encounters with random women.  Notice how his age changes.

Friday, March 9th – Circkle K main and greenfield mesa – 43 (Mesa)

you are a gorgeous gal driving a station wagon with 3 ribbons on the back! you buy Marlboro reds 100’s between 730 and 745 weekdays!! in am. You have gorgoeus auburn longer hair!! and great body!! I drive a white Ford ranger and parked next to you on this past thursday!! I get smokes too! could I get some fries to go with that SHAKE? hope you read this!! its an older wagon you drive! and you wear tight jeans!! hope you are there monday am! hit me back if you think your it

Location: Mesa
Poster’s age: 43

 

Thursday, March 22nd – circle K on lindsay and baseline Mon. 7 pm – 41 (Mesa)

you were driving a white blazer was at the pumps! you bought an 18 pak of Bud! and asked for a pack of THESES? I bought keystone lite! you have longer auburn hair and tight LEVIS!! that looked so goo around your hips!! no ring seen on your finger!! WOW!!!!

Location: Mesa
Poster’s age: 41

 

Thursday, April 5th – circle K at main and val-vista wed at 4;45 pm mesa – 38 (Mesa)

you were a gorgeous blonde coming in the store as I was leaving!! you held the door and I said thanks! you said anytime!! think u drive a red grand am! wow!! long legs and beautiful hair!!

Location: Mesa
Poster’s age: 38

 

Monday, April 9th – circle K on lindsay and baseline Mon. 7 pm – 38 (Mesa)

thanks for gettin back to me!! but your e-mail address does not work!! or the phone number!! please get bak to me

Location: Mesa
Poster’s age: 38

 

Monday, April 9th – circle k on main and val-vista last week 445 pm – 38 (Mesa)

hey get back to me!! you e-mailed me but yuor e-mila wont go thru!! nor the number you gave me! gorgoues blonde!! jengirl??

Location: Mesa
Poster’s age: 38

 

Sunday, April 15th – hot brunette at Macayos on fri nite in parkin lot – 38 (Mesa)

I was walkin out out with another couple and you were outside with a nother gal havin a smoke!! you said Where do I know you from!! you have a smokin body and great smile!! wished I would have stopped!

Location: Mesa
Poster’s age: 38

 

Okay, buddy, none of these chicks are writing back to you – at least not with legitimate phone numbers or e-mails – because they can smell a lunatic a mile away.  Are you stalking all of the Circle Ks in Mesa?  I knew there was a reason I didn’t like that city. Everything bad happens at Circle K. I remember that from my court reporting days.

The Great Debate

When I was 14, I was visiting my dad’s house for the weekend and sleeping on the couch, which was the normal – I didn’t have a bedroom there. I’m a light sleeper. So it was a surprise that somehow between 12:30 a.m., when I fell asleep, and 7:00 a.m., when my stepmom answered a phone call from a stranger alerting her to the fact that her purse was scattered on the stranger’s front lawn, that the house had been robbed – and the burglar had somehow gotten past me. Three hunting rifles had been taken off of the wall along with a video camera and tripod, and of course, the purse.

The next night my dad took my place on the couch with his handgun in case anyone decided to come back. We used all of my babysitting cash to re-key the locks. But this story demonstrates many points: I grew up around guns (that were never locked up), the hunting rifles made it somewhere into the wide world to be used for who knows what, and that we are a violent society. The cops were surprised I was still alive and unharmed.

Not many years later, when my brother was five and a half, he was given his first gun for Christmas. His first few minutes alone with it and he shot out his bedroom light. I was never given a gun because I was a girl. Mind you, I never felt as if I missed out. But my dad and my brother perpetuated craving violence and guns. Even though I was the one who was on the couch, exposed, they were the ones who wanted to kill, kill, kill. At least, that’s what they projected.

My dad’s own father died of a self-inflicted gunshot wound. In fact, Dad was the one who found him. Included in the three rifles that were stolen was the one that Grandpa used to do the deed. It had a strange sort of sentimental value that I couldn’t relate to. Who would want to cradle that weapon, and use it over and over, knowing its history?

Fast forward a few decades to when I lived with violent men. One was the guy who grew up in Manhattan in a household whose own siblings stabbed each other. The last day I saw him was the last time I called the cops on him, when he was supposed to be gone at work while I moved my things out of the house we were renting. Instead he was hiding in one of the back rooms and came out when I set down some moving boxes and attacked me. I struggled to get back out to my car in my stocking feet and he was restraining me and pinning my arms, telling me that if I would just do what he told me to do, we would be happy. I finally wrestled free and got in my car and called 911. The responding police officers bought his big-eyed innocent act and told me that if I called them again that I would be arrested.

Then there was the live-in boyfriend who threatened to shoot me – twice. He also talked about taking his guns to work to shoot all of his co-workers constantly. The cops reassured me there was absolutely nothing I could do until he actually followed through and hurt one or all of us. 

Most recently of course was my downstairs neighbor who moved out the last weekend of July, 2017. He used to beat his wife and abuse their cat. Whenever I had visitors I was a nervous wreck, because I had no idea if he would pound down the door while they were here, falsely claiming that we were too loud, or take it out on me later, screaming and raging and dreaming up reasons to call the cops on me. Worse yet he could of course physically pulverize his wife and cat for revenge, just for existing. He was ex-military so I knew it was likely there was a gun or two or seven in his apartment.

So here we are in the U.S. with our easy access to the worst kinds of weapons and ammunition. I am the one who was laying on a couch while a stranger or two crept past me to rob our house; you would think I would fall into the category of wanting a gun for home protection. I grew up around them; you would think I would relax around them. I’ve lived with and around plenty of assholes who have wanted me dead; you would think that I would feel safer armed.

Fuck that.

First of all, we have over 7 billion people on the planet. We are no longer hunting strictly for food supply. Anyone who claims that is an outright liar. And hunting season is so abbreviated that there’s no need to keep guns out for the entire year to make them accessible to every man, woman and child on the planet. Second, home invasions do not happen with the regularity that the NRA has somehow convinced the gun lovers they do. I remember reading from one guy a quote last week that Texas experiences 800,000 home invasions a year. My answer was, “Are you talking about bugs?” I mean, c’mon. If that were true, Texas would be experiencing a mass exodus.

The biggest and hottest debate that has resurfaced is the arming of school staff. I cannot stress this enough, but there are so, SO many reasons why this is a bad idea. Right now I live in the city where Philando Castille was shot. He had a permit to carry a concealed weapon and told the cops, and was shot and killed anyway. If for some reason some idiots decided arming school staff members would be a good idea, the staff members had better be lily white, because we Americans cannot be trusted to be color blind. Even black cops have proven to have prejudice against black suspects without meaning to.

I posted this article on Facebook regarding an armed officer who never engaged in the shootout that was happening in Florida. He simply hung back while all of those kids were getting shot. I pointed out that if an officer did this, why would we expect teachers to uniformly charge without fear or hesitation, and to act correctly? A friend of 27 years, whom I considered a decently good friend, didn’t like that I used this as an example of why we shouldn’t arm teachers and staff. He also didn’t like that I proposed that we have stricter gun laws regarding background checks, wait times, amount of ammunition sold, amount of ammunition guns could fire, types of guns that could be sold on the market, and age of buyers/operators. He resorted to calling me an idiot. Finally, he just outright blocked me. 

But am I an idiot? I’ve just been trying to stay alive. I have all of this violence swirling around me, and all of these men are insisting that they have a right to violate me. I’m saying no. I will continue to say no. I’m good with saying no.

Lastly, here is a comprehensive list from a woman named Karen Nichols in Ottawa Center, Michigan; she had many questions regarding arming teachers and staff, and did a great job of articulating them:

Which teachers get guns?
Where will the guns be stored?
Who decides when guns can be brandished?
What penalties will apply if teachers mishandle a weapon?
Will teachers volunteer for gun duty?
Can teachers refuse it?
Who will audit their adherence to regulations?
Will students know which teachers have weapons?
Who will be liable if the teacher with the gun becomes the shooter?
What will be the consequences when students are accidentally shot by a teacher?
How will armed teachers communicate in a tactical situation?
Will teachers with a history of mental illness be allowed to use weapons?
Will teachers be required to disclose any history of mental illness?
Will teachers be issued a weapon? Reimbursed for purchase? For ammunition?
How will administrators conduct non-weapon-related discipline against a teacher?
Will there be armed assistance available to deter workplace shootings?
Who will shepherd the armed teacher’s classroom while the teacher is attempting to locate the active shooter?
What happens when a teacher misidentifies a student as a threat in good faith?
Will teachers who do not carry lethal weapons be offered non lethal alternatives?
If an armed teacher is shot, can another teacher employ his or her weapon?
How will armed teachers identify themselves to arriving first responders?
Will armed teachers be required to learn how to give first-response medicine?
Will armed teachers be required to attempt an arrest before using lethal force? Under what circumstances?
Will proficiency training on weapons count for teachers’ continuing education and professional development?
How will insurers adjust health and other rates to account for the presence of armed employees?
Will teachers receive additional pay for being armed?
how often will armed teachers be re-evaluated for licensing purposes?
Will armed teachers leading field trips deposit their weapons in a personally owned vehicle or school-owned transport?
Will one teacher per wing of a school building receive weapons? Two? Three?
Exactly which standards will count for proficiency—greater than a big-city police department, State Police, FBI, hobbyist, marksman?
In training scenarios, how will using force against innocents be penalized?
Will racial sensitivity courses be required?
Do parents have a right to refuse to send their kids to schools with guns?
Will students have to sign waivers? Will parents? What if a parent signs a waiver for a minor student who, when that student turns 18, refuses to abide by its provisions?
Will teachers on probation be allowed to carry weapons?
What about teachers with active union grievances? Complaints about sexual harassment? Anger management? Divorce proceedings?
Will armed teachers wear holsters?
Will they be stationed strategically during pep rallies or other gatherings?
Will they participate in lockdown drills as if they were armed or unarmed?
Will funding for the policies outlined above be distributed according to local budgets, statewide formulas, or national formulas?
Will schools in high-risk neighborhoods receive more or less funding? Suburban schools?
What is the right ratio of armed:unarmed teachers by grade level?
What is the procedure for debriefing and assessing armed teachers’ performance during a crisis?
Can an armed teacher who flinches be fired? Can an armed teacher who breaks protocol be rewarded?
Will preschool teachers have guns?
Will teachers in “juvie” (high risk) schools have guns?
Will the teacher or the school be liable if their gun is stolen?
Can administrators carry weapons? Can they do so in disciplinary situations?

Think about this: I quit playing clarinet after 8th grade because my band teacher was an outright asshole. After I quit, he was fired for punching a student. But let’s give him a gun, right?

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.]

 

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.

The Best Little Gift Guide

I used to pride myself on being able to find little things – and big things – that seemed like a perfect fit as gifts. I would look or listen for clues. Okay, maybe sometimes I wouldn’t get it quite right, but at least I would try. My shopping would take place over the course of the entire year and during festivals and trips, because you never know when you will stumble on something unique that screams “_____!” (Use your imagination.)

But times are different. It seems like the majority of the people I know are much more careful about how and where they spend their money because of various constraints or social awareness. I have to be careful too; I no longer have an income, so no extra money to spend during the holidays. This list that I’m going to lay out is for someone – like me – who has little or no income, who might not be able to buy much of anything anymore.

1. Time. This is a big one, and it’s free! I simply can’t get out and socialize like I used to, because my body has put a hard stop on that. Sometimes I don’t want to be by myself. I love it when people visit or call, but I don’t always initiate stuff like that because I don’t want to be a burden. There’s nothing worse than a whiny-ass friend constantly saying “Pay attention to me,” right?

2. Gift cards. Conventional manners/wisdom say that giving gift cards is tacky because then people will know how much you spent on them, yadda yadda yadda. Bullshit. I love gift cards. I especially love them when my entire monthly budget has gone to rent/utility/medications and I have nothing left over to buy groceries, and I have a lovely gift card to the rescue.

3. Wheels. Man, I miss driving. I miss those Saturday mornings when I would get up at 8 am and run around until 11 am and go to about 8 different places and get all of my shit done. Now I ride the short bus and I can only go one place, and it takes me 2-3 hours. And it’s a drag. And I never know who’s going to be with me and if it’s going to be a bat out of hell drive. I would love it if I could have a whole morning of driving around for errands, like dropping off my recycled clothing/rags, recycled toner cartridges, disposing of hazardous waste, petting animals at the humane society, recycling old medications, getting 5 favorites from Trader Joe’s and 6 favorites from Hy-Vee and 4 organics from Aldi. As a side note, disabled people like to recycle too. It’s just that we can’t easily get to these locations and facilities. Plus, me getting out to do these things instead of doing them for me means I get to get out. (As a side note, I have discovered that more than a few people have assumed that the short bus is free. It’s not. It’s actually more expensive than the regular bus. Each round trip for me is nearly $10. It’s really, really expensive when you have no money coming in at all.)

4. Independence. My oldest sister made up a list of modified items that would have made her life easier, like rounded chopping knives that were easier to grip. We were puzzled at the time; it didn’t seem like fun, especially for Christmas. She had debilitating MS and was bedridden because she had lost the use of her legs and some of the finer motor skills of her fingers and hands. Looking back, and living what I am now, I understand that ignoring her list and insisting that we only get her “fun” stuff was a huge mistake. It is not only fun but a huge relief to get everything you ask for and need. So if someone asks for a modified chopping knife, get them the chopping knife.

5. Entertainment. I’m a movie/TV snob. I don’t like most sitcoms because there’s a lot of yelling involved. I also don’t watch cartoons. I know what I like, and I’m a binge watcher! I’m a loyal customer of Netflix, Hulu, and Amazon Plus. Yes, all three. They have some overlap, but there are some things that don’t appear on all three, and Hulu allows me to watch network shows that aired the night before. If you love me or someone like me who is in bed a lot, give the gift of streaming entertainment. I guarantee you it will be used. (Side note: I’ve tried reading. I used to be a voracious reader. Because of brain damage and eye problems, I don’t read much right now. Zero memory and attention span. Squirrel!!)
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6. Amazon. This deserves its own category. I have used Amazon for vitamins, durable medical equipment (that was not covered by my insurance), ingredients to make my own deodorant/antiperspirant, and tons of OTC medication like Benadryl and Pepcid, which I take megadoses of. Of course, I use Amazon Prime too, so I get the movies, and it comes automatically with the music service too. Another great thing is that if you purchase through Smile.Amazon.com and designate a charity to receive 0.5% of your total spent, you can automatically make donations. I don’t have money to donate to any causes, so it still makes me feel as if I’m making a contribution, even if I can’t hand anyone cash. So you will never go wrong with an Amazon gift card.

7. Skin. Disabled people like luxury stuff too. Not everyone wants to smell like an Avon or Dove whorehouse or litter box. A little company called Villainess was just purchased by a new owner and sold out within a few days of its new stock because everyone was so excited to dive back into its soaps, lotions and scrubs. I’m telling you, their stuff is sooooooooo yummy. I just got 3 of their jars of lotions. I’m going to wait to open the jars until I feel really poor because it should be used within 2 months of opening (less preservatives = better for your body) and I want to stretch them out. So keep an eye on them, and put in an order and make someone feel extra special.

Another great place with amazing combinations is Black Phoenix Alchemy Lab. I’ve had some bottles for 2-3 years because I have enough to rotate them around and not smell the same every day. You can buy samples (“Imps Ears“) instead of full bottles, but if you are sure you are going to like all of the flavors that they list, go ahead and buy a whole bottle. I have very rarely been disappointed. Buying scents for other people is a crap shoot, so be very cautious! I’m deathly allergic to lavender and patchouli. Anybody can be allergic to anything. If you aren’t sure, there are always gift certificates.

8. Pain control. I reviewed two different lotions in my blog, and I recommend them both: Mo’s Dream Cream and Invigorate. You can’t go wrong with either of them.

The Oska Pulse is a device that is a financial investment, to be sure, but it has a 30-day money back guarantee, and I use mine every day – because there isn’t a part on my body, somewhere, that isn’t hurting. Sometimes I end up using it six or seven times on that part. I’m just grateful to have it because I always end up feeling better. (It is important to note that it shouldn’t be used around any medical devices that are surgically implanted that could be affected by magnets, like shunts, stimulators or pacemakers. My shunt is strictly all silicone because I’m allergic to nickel.)

9. Massage. I go to a massage therapist once a month. There have been a couple of times where I have second-guessed myself and the wisdom of going, especially when I’ve had to shell out extra for medications and money is getting low, but when I’m on the table and getting worked on, I know I need it. First, it’s hard on my body to be in bed so much. Second, I rarely ever have any physical contact with anyone else. The massage is it.

10. Activism. I can’t do all of the work. Literally, I can’t do all of the work. The best gift you can give people that you don’t even know personally is to tell your elected officials that disabled people need housing, healthcare, transportation and good nutrition. I’m still waiting for housing that I was promised 8 months ago; it would mean that I would have things like grab bars, instead of constantly falling in the shower, and affordable rent, instead of paying full price on zero income (still no disability income after nearly 3 years of filing). Do not buy into this idea that everyone who is disabled should be punished.

Honorable Mention:
Check out The Unchargeables for a variety of chronic/invisible/rare diseases for gear – you can even look for items according to the disease! I checked my alphabetized list and they have a few of mine in there. Pretty impressive! And for each disease, there’s a bunch of items, so you’re not limited to just a t-shirt or bracelet.

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.

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.”????

Send Up The Flares

It has been a really long time since I’ve logged into my FetLife profile. I didn’t realize it, but I had three messages waiting for me – one from about two months ago, another from four months ago, and the third from a full year prior. The one from a year ago I let slide. I mean, I did put in my profile that I don’t log on and that I’m going through a health crisis, and I can’t “play” in any way, shape or form. I did make a small adjustment to my profile, which alerted my friends and RELEASED THE KRACKEN.

One former spank party friend wished me well and told me that he had heard I moved to California. I replied that that wasn’t the case, I’m actually in Minnesota, taking care of some serious stuff. Then the guy who sent me a message four months ago hit me up again, this time with his instant message name and phone number. I replied that I was not looking to do ANYTHING, but that didn’t deter him; he said he would be willing to “give me a massage if I needed it.” Um, right, do bedridden women usually fall for that?

Then another guy whom I’ve played with at spank parties in Arizona hit me up to let me know he was actually currently in my city for work, and was I interested in getting together for a session? I groaned. This guy…he’s very, very, VERY focused on his kink. I like to have fun. It’s not the be-all, end-all thing for me. He carries a backpack with all of his tools. He actually has two pictures of me (not showing my face, only my red ass) on his profile. He’s totally into role playing, having me stand in the corner, punishment, the whole bit.

So I turned him down, because there is no fucking way I can do anything, including hang upside down, or put my stomach over his knees. The thought makes me cringe. I would be walking like a cat just getting out of anesthesia. And it would be painful, and not in a good way. So he asked me if I could be his chat buddy while he’s traveling for work: talk to him about discipline, spanking, corner time, paddling, etc. I’m rolling this around in my head, and first of all, this requires research. And time. And creativity. Probably some motherfucking Skype. A hairbrush (because wouldn’t you know it, I’m bald). It’s all I can do to peel myself out of bed to make food for dinner every day, and this guy wants me to put a lot of effort into keeping him happy and satisfied.

It takes a lot of effort to turn him down and I know I’m going to have to repeat myself. It’s not my first time. And there it is: “I’m traveling a lot and I don’t get the opportunity to do what I need to do.” So I have to drive it home for him: I’ve got serious stuff going on, I’ve got scar tissue in my brain and I have to lay flat 20-22 hours every day, I’m in pain, I can’t get another operation right now. His reply: “Okay, just know that you’re missed.” BTW, he has a wife and two little children at home. She knows about his kink and his attendance at the spank parties; I don’t know what else she knows because the travel job is news to me – but then again, we were never close.

This is also not the first time I’ve had to turn him down since I started having shunt failures. His kink always comes first. It’s fucking exhausting, man. But if y’all are interested in a pen pal, hit me up.

In other news, for about three weeks I’ve been dealing with persistent hives on a daily basis. I wasn’t quite sure what to do because of losing my rare disease doctor. However, I received a message from him this morning indicating that he put a script through to the compounding pharmacy for me that will (hopefully) help with my hives as a sort of last hurrah while I try to find another doctor. I also got the names of two doctors in the area who would be willing to communicate with him. The problem is that one is old as dirt and so probably won’t be practicing much longer, and the other one isn’t much younger and has a bad reputation for being a raging bitch. I need to sacrifice a chicken and do a dance around a fire or something.

Also today, I received a call back from the neurosurgeon’s office whom I originally saw two years ago when I relocated here from Phoenix. I called him as a last-ditch effort to try to be seen by him or someone else in the practice and get away from my current neurologist. She has been telling me that I don’t understand my symptoms – kind of along the same lines of telling me that even though I stubbed my toe, it’s really my nose that is hurting, ridiculous like that. So this neurosurgeon was kind enough to order a repeat lumbar puncture, which I’ve been begging for since December 2016. The lumbar puncture he ordered is “high volume,” meaning they will take at least four vials of cerebrospinal fluid. They will measure the opening pressure (like you would when you check the pressure on your vehicle’s tires) and then they will send the vials of fluid for testing of the proteins and check for bacteria. Getting this done will also relieve my symptoms for a few hours. He also agreed with me on my choice of neurologists within his group. 

My current neurologist’s justification for not ordering a current LP is this: Usually slit ventricles means that you are overdraining. I pointed out to her that my shunt failed 17 days after surgery in 2015 so I’ve got high pressure, and she witnessed my shunt opening up for about 30 seconds during my last appointment, and my paralysis went away, then came back. Then we read scientific journal articles together about adults with slit ventricles and shunt failures and symptoms. Then she said it only happened to some adults. I asked her why I couldn’t be included in that “some.” She told me it didn’t count because I wasn’t throwing up, I was only nauseated.

Fuck that. Spinal tap, here I come.