Save The Date

Statistically, Minnesota is one of the worst or the worst state in the U.S. when it comes to wait times for disability processing. I didn’t know this when I relocated from Arizona to Minnesota to try to figure out what was going on with my body. This article from the Minneapolis Star Tribune states the average wait time is around 570 days from filing to have a judicial review. I just got confirmation that my hearing is set for March 28th, which will put me at about 770 days of filing the appeal (and almost 3 years to the day of filing the initial claim of disability). The back log just keeps getting worse.

I’m not sure I would have done this any other way. As horrible as it has been with trying to get doctors to take care of me in Minnesota, I did finally get three diagnoses that I have been missing for years in addition to what I already knew. I forget what my count was when I entered the state, but I’ve seen 64 doctors since July of 2010. This has not been an easy process. There is no clear path.

Thankfully my allergist has already agreed to fill out paperwork for my hearing, and my counselor has as well. I will be meeting with my primary care doctor and pain doctor next month to ask the same from them. I’ve been rejected by every neurologist and neurosurgeon in the area as well as banned in writing by the Mayo, and I can’t go out of state because I’m on Medicaid so it’s not allowed, so I’m not quite sure how that is going to be looked upon by the judge. There’s absolutely nothing I can do about that.

One incredible resource I wish I had stumbled upon before I started this process but am eternally grateful for is the blog How To Get On. There are sooooooooo many links/ideas/resources/testimonials that it sometimes boggles my mind, and I really can’t imagine how many man hours it took her to put it together. It’s unfortunate that the author sometimes gets reported and blocked by Facebook for either posting “too much” (seriously??) or for questionable posts (again – say what??), so we have to keep it circulating so as many people as possible benefit from its content.

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Ring Around The Rosie

I don’t know if you knew this, but the old nursery rhyme “Ring around the rosie, pocket full of posies, ashes, ashes, we all fall down!” is about the black plague.

Or, actually, it isn’t, according to Snopes.

I think about it this time of year, while I maneuver my way through hoards of people who don’t cover their mouths when they cough, or if they do, they immediately touch the door handle I was just reaching for. The Plague. Everyone is just waiting to infect me, I know it.

I’ve been having a hell of a time just getting a flu shot. Until two years ago, I never got one. Then they started making an egg-free version, meaning they didn’t grow them in an egg base as the very cheap food source. Now they also make the shot preservative free. It’s the holy grail for me since I’m allergic to raw eggs AND preservatives. However, my PCP’s office won’t order it for me. They insisted I call my insurance company, but the insurance company told me they couldn’t tell how it would be billed (as in, would there be a special code for an egg-free and preservative-free flu shot?), so I’m supposed to get the code from the doctor’s office. The PCP’s office doesn’t know how to bill for the shot unless the insurance company knows how it should be submitted, otherwise I’ll have to pay out of pocket. So…………

Scratch all that. I just talked to Walgreen’s, and they have an egg-free, preservative-free flu shot on hand, and I just have to show proof of my medical assistance. So guess who’s getting a flu shot from Walgreen’s?

This is the reason why not having preservatives is a big deal.

I’ve been giving myself Humira injections since August 30th to combat hidradenitis suppurativa outbreaks that I’ve been experiencing for about the last 8 years. It’s another autoimmune disease that up to around 2 years ago, not much was known about. I’m not going to spill all here, but trust me when I say that it’s super, SUPER painful. And doctors were cutting infections out of me, but because of mast cell activation syndrome, the lidocaine they were using wasn’t numbing me, so I would feel every slice. Before the HS was diagnosed, all of the doctors didn’t understand why I was getting the infections, and they thought that it was something that I was doing wrong – not bathing properly (HA!), wearing the wrong clothing (HA!), shaving inappropriately (because I don’t grow hair – ???? – HA!).

The treatments for HS include getting monthly injections of steroids in the normally infected areas – which I don’t know anyone who would go for that – or using oral and topical antibiotics, which I’m allergic to. The last resort is Humira.

The bitch of it is that I’m also allergic to the Humira shots. On August 30th I did the first loading dose of 4 shots. I didn’t have a reaction until 10 days after that, so it took me a while to catch on, and the reaction showed up only on my legs and not my stomach.

So I thought, okay, there was no reaction to the two shots in my abdomen. I’ll just get my abdomen with the next two shots. Besides, doing the injections in my legs hurt like a bitch. But then:
20170915_190958(Keep in mind I never show my stomach to anyone. The zipper scar you see running from my belly button is the extra large cut my neurosurgeon had to do on 12/21/13 when he didn’t have anyone assisting him on that surgery, which is the one where he finally saw my abdomen with his own eyes and remarked how it looked like a war zone inside and acknowledged my allergy to the shunt.)

So these two welts showed up the same day as the injection, and hung around until the Monday after – about 5 days. After the itching stops the welts turn into huge bruises.

I called the manufacturers of Humira to report my reaction. I knew immediately what the problem was before I even called. They make the shot shelf-stable for up to 14 days so that if you have to travel or lose power, you can still use it without it needing a refrigerator. Conclusion: preservatives. Specifically, there are 8 of them in the medication. When I talked to the company, they said the FDA approved them ONLY to make the formula with the 8 preservatives. It’s possible they might release a formula with only 2 preservatives in 2018, but they are still waiting for the final approval from the FDA. They cannot allow me to take another form of Humira with less preservatives because it’s only approved for use in the U.S. with the 8 preservatives.

I have to stay on it. If I go off of it, it immediately loses its effectiveness by 20-30% for the rest of my life within the first 2 weeks of discontinuing it.

Humira does lower my immune response. I’m already compromised because of my non-existent IgG3 and IgG4, so I have to be extra cautious. I’ve noticed that I’m much more fatigued than normal while I’m on this juice. The maid doesn’t get a whole lot done these days, know what I’m sayin’?

Usually my stomach doesn’t see the light of day unless it’s the surgeon operating on me (you can see another horizontal scar on the right pic above), but this is the reality of the mast cell disease. If you don’t know me and you see me clawing at my belly in public, now you understand why. I really do want to rip my skin off.

Two days ago I woke up for another appointment and my entire upper half was covered in hives. In this pic you can also see the shunt protruding because of all of the scar tissue that is growing around it. The rate it’s growing is highly unusual; the doctors are seeing in 3 weeks what they would normally see in 20 years. But I have no freaking idea why I woke up with the hives because nothing in my routine has changed as far as I know:
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One thing that ended up on my good list is that I discovered that I’m not allergic to potato chips! Some of the other MCAS patients were discussing them in a group and so I took a chance and snuck some at a party – plain, salted – and didn’t develop hives, and didn’t lose the inside lining of my mouth or develop sores. The other crazy upside is that because I have POTS, I’m also encouraged to eat higher quantities of sodium so my blood pressure doesn’t dip too low. So, people, I am rediscovering Ruffles! I haven’t had them for decades! But they have to be strictly plain/salted, no other flavors including vinegar. It’s a nice change from the 8 foods I’ve been stuck with.

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. 

Back To Life, Back To Reality

I had the pleasure of planning my arts high school’s 25th reunion for my classmates. It’s difficult to explain, but our school was unlike any other that most people have attended. It’s a public school and we came from all over the state of Minnesota, we had to audition or submit portfolios as well as letters of recommendation, we lived on campus like a college, and we created life-long friendships (most of us). I’m not saying it was without flaws. But going to college was a complete let-down because we already did it all, and our skills were senior level when we went to our respective schools post-high school.

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The reunion officially lasted nine hours. We started with performances, some dancing, I handed out random door prizes (which included ramen, Pop Tarts or macaroni and cheese plus sticks of margarine but NOT milk – because we never had milk; also Nerf guns, and cassette tapes such as Crash Test Dummies, The Sundays, REM, M.C. Hammer, Bullet Boys, anything that would have been released by 1992). Then we headed over to a pub that served microbrews and sausages where whomever couldn’t make it to the portion at school hung out with us there. We were officially done at 10 pm, but some people wanted to keep partying, so they went back to one couple’s hotel room and kept it going until 4 am. I didn’t – I was toast.

(By the way, the picture with the classmates trying to pull open the doors is something I didn’t find out about until later. They were giving themselves a tour, not realizing that they locked themselves in an area and they would have to wait for someone to randomly walk by and let them out.)

Our turnout was excellent. My classmates are literally scattered around the U.S. and the globe. I haven’t lived in Minnesota for 20 years and would have been counted as an out-of-towner if I hadn’t been forced to move back because of my circumstances. I know that I have classmates in Sweden, South Africa, the UK and France for sure, but I’m also sure that I’m missing some places. So to have this many show up is considered a small victory. And everyone was helpful, mostly sober and didn’t want to leave.

When I was attending school here, my major was theater (located directly to the right of the dancing space where everyone is slapping hands and their shoes are off). I discovered there that I had a natural affinity for organization and detail. So that was the reason that I gave everyone for wanting to organize the 25th reunion.

But I had an ulterior motive.  Two years ago, and even continuing through to today, a lot of the classmates that traveled back for the reunion (either by driving or flying) have helped me. When I relocated from Phoenix to St. Paul, they contributed to a fund. Sometimes they organize and send me gifts. A lot of them have their own hardships to worry about, so I appreciate their contributions even more for that reason. So the fact that I could work out every damn detail for them and all they had to do is show up was great – and even better that they all had a really great time and didn’t want to leave. 

Unfortunately, I did have to ask for some work from a few of them, but being the wonderful people that they are, they stepped up and said of course, and blew the rest of us away. The school was under great scrutiny and was nearly closed, and I had gone to all of the state senators and representatives, asking them to come to about an hour and a half of our reunion to meet us to see what had become of one of the first graduating classes from this school. One of the representatives, Mike Freiberg, happened to be a classically trained pianist and agreed to accompany our opera singer – and wow! It was fantastic! In all, we had two writers, a violinist, an opera singer, and a dance instructor.

Pictured below is an example of many of the lockers – students are allowed to paint them however they choose. Also, the woman in the phone booth is one of the readers from the performances. The phone booth is an infamous one; it was down the road from us and is from before the advent of cell phones, and we all used to walk down the road to use it when we wanted privacy. 


So for the week after the reunion, I stayed in bed. It was totally worth it. I love these people. Some of them I’m lucky enough to see frequently, and some I suppose I’ll have to wait another 25 years to see, but we know we had a unique experience and kinda feel sorry for people who had to drag through regular schools. We had a completely amazing experience for our junior and senior years.

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Today, I had a doctor’s appointment for an outpatient surgical procedure. I’m not going to go into detail for what it was. I was just dreading it. So I got the usual notification from the cab company that the driver was on his way, and then I got a notification that he was outside. So I went out. He wasn’t out there. Sometimes it happens that the notification comes about 60 seconds before the cab. I wasn’t alarmed.

However, after waiting for about 12 minutes, the cab still didn’t show. Today the temp was 91 degrees Farenheit, and Minnesota is humid this time of year. Also a problem: My high-rent building’s front door was vandalized, so I can’t actually get in with my key. If I want to enter the building, I have to walk around to the back, which is the equivalent of walking the length of a city block because the spaces between the buildings are fenced and locked off. I also had no idea when this cab was going to show. So I called the cab company.

They claimed he was five minutes away. I have a GPS tracking map and he hadn’t moved. I explained that the heat makes my condition worse. I also can’t go back inside because I can’t go in the front. They told me to just wait. This is what happens to me because the cerebrospinal fluid builds up in my cranium because my shunt hasn’t worked for two years:

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Many times my facial droop has been mistaken for myasthenia gravis. I can assure you that I do not have that. I can actually slosh my CSF around, and when I tilt my head parallel to the floor, the paralysis goes away within seconds. Also, my face is not swollen. The muscles on the left have relaxed because they are paralyzed.

I was actually stuck out in the heat for a total of 35 minutes. When the driver finally got there, he first tried to force me to cross the road to him. I can’t see very well like this – this is as far as my eyes will open. When he finally came to my side of the road, he parked up the street so I had to walk to him, even though there were spots open in front of me. When I got in the car, I asked him to turn on the air conditioning. He told me I had to wait until he “got going.”

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When he finally did turn on the a/c, it was at the lowest setting to spite me. I had to tip over in the back seat to take the pressure off of my head, which at that point was absolutely unbearable.

When I got to my appointment, they took me back to the exam room and got me on the table. However, I wasn’t doing so well. The nurse and the PA both said I looked grey and the PA reclined the table while the nurse ran to get me some sugary drink. I whipped off my wig and they slapped wet cloths on my neck and head. I could tell my pulse was all over the place, but I knew this wasn’t a blood sugar problem – those feel completely different to me. [I am getting checked for POTS next month.] When I got up from the table, I saw that I had completely soaked through the paper with my sweat, which was disgusting, but they said it was an obvious sign that I was in distress. We made sure everything had returned to normal and we got on with it.

I absolutely wrote up a complaint to the cab company, with details and times. They have a contract with my insurance company, and if this driver can’t handle medical rides, he shouldn’t get them. Period. 

Pat, I’d Like To Solve The Puzzle

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This week I’ve been taking care of stuff; taking care of me by walking to make myself stronger, taking care of medical records, taking care of clogs in my sinks and taking care of throwing out excess trash. It’s the medical records that sent into emotional pits, though. I was angry after reviewing a bunch of misinformation and it was rolling around in my head. But then I had an epiphany.

Back when I started having operations on my cranium, when my shunts were relocated from my back to my brain, my neurosurgeon remarked that my meninges were incredibly tough to break through. I don’t believe he’s ever noted that on my medical records, though. But his memory is like a steel trap so if I went back to him, he will probably be able to recall it with certainty. It certainly stuck with me. He said he had only seen it once before in his lifetime.

And then there was this published paper by Jonathan Kipnis where he explains that he and his team discovered lymphatic drainage vessels in the cranium. They weren’t known about before because when autopsies and dissections were performed, the lymphatic vessels were torn and destroyed because of their fragility. This paper was published in July of 2015; I traded emails with Jonathan in November of 2015. He explained that he doesn’t actually work with humans in clinical trials so he couldn’t help me, but after I connected the dots this week, I emailed him. I’m not sure I’ll hear from him.

Lastly, I have this mast cell activation disease diagnosis from Dr. Afrin. When I saw him in January, he told me that my outrageously high histamine level is probably what is making everything change and grow into scar tissue, including the tumor, as well as the tract along the shunt.

So here’s what I think is happening: Back in 2010 when I first started having the really bad symptoms, the meninges had already turned tough because of my high histamine levels, and the fluid can’t drain properly into the lymphatic drainage vessels like it normally would. That’s why I need shunts. The shitty part is that I’m allergic to the shunts. Just as an aside, this whole time I thought that the underlying cause was an autoimmune disease, but of course I had no idea what it would be.

So what now? That’s the question my mom asked. The tissue that has changed cannot be changed back. There is nothing on the market that I’m not allergic to. I’m at a high risk for aneurysm or stroke. This is going to kill me, there’s just no telling when. I mean really, who else do you know that is going through this? None of my doctors would be able to begin to guess.

Of course, I have to check with my doctors…but again, I’m the one leading them, not the other way around, which is almost always the way it is with rare disease. First I’ll see the neurologist and explain all of this to her, and hand her Dr. Afrin’s notes and Dr. Kipnis’ notes. I’ll see Dr. Afrin in August. After that, I’ll contact my neurosurgeon in Phoenix and roll this past him. I hope that he remembers that I was right about everything that I told him, even though some things took as much as 2.5 years to admit.

So for now I’m still waiting for my disability hearing. I talked to my attorney’s office and they called the person who sets the dates for the hearings, and they were told that hearings were being set for 18-22 months past the appeal filing. My last appeal was filed in February of 2016 (the initial filing was April 2015), so by the time I’m in front of a judge, I’ll have been waiting for nearly 3 years. Every state is different. I can’t get a rush unless I’m homeless, stage IV cancer, a danger to myself, or I have no access to care.

So I wait.  

Is It Time For A Vacation Yet?

I’d like to take some time off from my daily life. I’m not sure if that’s allowed, since I have loads of time off already – my only job is to rest and get ready for the next doctor appointment. But still, I’d like to look at something other than these four walls. In fact, I’d like my old life back and a reason to take a vacation. 

Anyway, yesterday was my birthday, and a couple of friends flew up from Colorado, and we decided to brave the largest art event in the U.S. – the Art-a-Whirl in Northeast Minneapolis. What was happening in one warehouse would have covered what most cities considered an arts festival, but this event takes over miles. We just stayed within the limits of where the complimentary trolley traveled. Even with the trolley my phone tracked 7,000 steps for me yesterday. That’s a personal record (and comes with a cost, because I’ll be in bed for most of the week with the exception of one appointment tomorrow morning and Wednesday morning). My legs were having none of it. They were starting to spasm in the last building we visited.

I did pick up one little piece of art, which reminds me of a line I’ve heard over and over in my dating life:
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No. Oh, Wait…Oh, That’s a Definite No.

Of course it’s been a while since I’ve logged on to OKCupid, but there are some guys who don’t pay attention to that and just like my pictures or check out my profile without looking at the last time I’ve logged in. I will admit that even I’ve been excited about a profile and then noticed too late that it’s been a month or three since the guy has logged in, signaling either 1) He found someone, or 2) He gave up, or 3) He’s in jail. I got a little notification in my email with a note from the guy saying, “I do have a German shepherd and a Siamese – otherwise I’m clean- list-wise”

I’ve heard this before. I logged in. We were a whopping 43% of a match. I looked over his profile, and the very first thing I saw is that he’s Christian, and it’s somewhat important. What did I specify in my profile? I won’t date someone who participates in organized religion. Why not? Because I’m not waiting to be saved or led or subjugated. I can lead a morally upright life without religion. I can lead a spiritually aware life without religion.

Some other tidbits from his profile: He admits he drinks regularly (at least 4-5 nights a week), he really, really wants to fuck anything that moves, and he’s a Dom. A little more from his questions: He doesn’t want women to have “too high self-esteem; he wants to date a slut; he would prefer to date only in his race; jealousy is healthy; he could be in an open relationship; he’s just looking for sex for the next few months.”

I started with the easiest one, and replied that we wouldn’t be a match because he has listed himself as a Christian and that it’s important to him.

His response: Really? I’m a barely attending Lutheran with doubts. And what is with intolerant people on all sides of the spectrum- Good luck with your godless utopia
Me: Since your profile says that you’re Christian and you’re getting pissy that I pointed it out, I’d say it’s pretty important to you. And since you’re offended that I don’t believe in organized religion, I’d say we’re not a match.

I didn’t even have to take it any further than that because he blocked me and so I blocked him (sometimes these jackwads come back later when they are drunk and looking for spank bank material). But really, he’s “questioning” his faith because he really, really wants to fuck around and he doesn’t want to feel guilty about it. It was such a weak insult to throw at me – “godless utopia”??? That’s only a horror to someone who believes it’s the worst kind of hell a soul can suffer. If he wasn’t strong in his faith, he wouldn’t have written it. I guarantee you he’s still trying to work out how to give himself blow jobs.

The Ballad of the Broken Neighbors

“FUCK. FUCK FUCK FUCK FUCK! SHUT UP! JUST SHUT UP! FUCK YOU!”

It first came on Sunday night, a man’s voice, from the direction of my windows to my right. I had my ear buds in and had been laying in bed, watching movies, as usual. My first thought was that a guy was watching a sporting event and was just generally being a dick and being really passionate about a goal that was scored.

But then I heard a much softer female tone answer. I could tell she was in tears but I couldn’t make out what she said. Then he again exploded: “FUCK YOU! FUCK YOU! SHUT UP! SHUT THE FUCK UP!” Then he punched something, hard, multiple times. It may have been the wall, or it may have been a piece of furniture, but I don’t think it was her. I couldn’t tell where it was coming from. I got out of bed. This building is old, built somewhere around 1910, and the floors are the original wood. They creak with every step I take no matter how quiet I try to be.

I went to the kitchen, and it seemed to be slightly louder. I could hear them both. I have a very tiny apartment, only 360 square feet, and much of the wall space is covered with art, so it was really difficult for me to find any blank wall to put my ear to. By the time I did, they had stopped. I hovered for a while but everything stayed quiet. I slowly walked back to bed, wondering if they were truly done.

At around 12:30 a.m., there was another outburst. “FUCK! FUCK YOU! STOP IT! JUST STOP IT! JUST SHUT UP! SHUT THE FUCK UP! FUCK FUCK FUCK FUCK FUCK!” More crying from her, and words, but I still couldn’t hear what she was saying. I got up and they stopped. I got into bed again and wondered when they moved in, because I hadn’t heard anything like it before from that space below me.

At around 9:00 the next morning, the yelling started again. I got out of bed and laid down on my floor so I could put my ear to the floor boards. I could hear them walking around, I could hear the air moving between their bodies and their ceiling/my floor, I could even hear them making holes somewhere close to me – maybe to hang electronics, or pictures? I felt like I was in a movie, where the cinematographer shows how close one character is to the other, and all that is separating them is one flimsy piece of board. I wondered if they could hear me breathing. I tried to hold my breath.

I heard him say, “Why do you always fucking do this?!” and I know that she answered because I heard her voice, but it was still too quiet and tearful to make out the words. Then it was silent except for their bodies moving, and the periodic pounding into the plaster. After about 15 minutes I got up from my place on the floor because it was becoming far too painful to maintain, and I started getting ready for my caseworker to visit. As soon as I did, the yelling started again.

When my caseworker arrived at around 1:30 p.m., I warned her that the couple in the apartment below mine had been fighting, and she would likely hear it. About three minutes later, we heard the guy again, just as loudly as all of his other rants. He never seemed to tire. I imagined that the woman was exhausted.

His rage continued for a total of 15 hours on Monday. He hit something again too. I still don’t think it was her, but it set me on edge. The last screaming rant was around 12:30 a.m. again; I had my ear buds in watching my final movie of the night trying to get tired enough to sleep and his screaming penetrated the ear buds.

For the next two days, Tuesday and Wednesday, he had screaming fits again, but not for the 15 hours that he did on Monday. On Wednesday I typed up a text to forward to the property manager but at the last second deleted it. Then an hour later, a notice was slipped under my door saying that we were getting completely new apartment managers (our 7th and 8th in a year and a half), and to be patient during the transition. That’s why my instincts wouldn’t allow me to text the now-fired old manager!

Today at lunch I took a chance and stopped by the office, which is located directly across from the new tenants’ apartment. I pulled the door shut, introduced myself, and told the new managers that I heard abusive behavior from the male tenant of the two. The new managers said that maybe the guy was just watching a game or playing XBox. I said that was bullshit, and that the woman had been crying. Then one of the managers said that yes, she had seen the woman crying. Then they said they didn’t see any marks on the woman’s face. I told them that didn’t mean anything, and by the way, women don’t cry over scores that men get while playing XBox. They said that I could always call the cops if I needed to. I am fine with that – and I will, do not doubt that – but here’s my problem: I have to actually do things to get ready to get to the front door to let the cops in that people who are able-bodied don’t think twice about. We have a secured front door without an intercom. Plus I am the only apartment within close proximity of the asshole, they don’t touch walls with anyone else (even though my next door neighbor heard him shout once), so when I report him, he’s going to come after me.

The new managers assured me they would talk to the new tenants. I went back to my apartment and laid down, and then someone started banging on my door and buzzing the ancient doorbell. I had to say “Just a minute!” more than a few times to get them to stop. After putting my wig back on, I opened the door to discover one of the managers there; she apologized and said she should have called instead of knocked, but then said that the woman said the man was playing with his XBox. I told the manager that that was absolute bullshit. The manager said that if I felt like the new neighbor was disturbing the peace, I was certainly welcome to call the cops, but she had to accept what the woman told her. I asked her if the woman came up with the XBox explanation on her own, or if the manager gave her that option as a possible “out,” and she couldn’t tell me.

So at this point, it’s me against the neighbors. Why do women stay? They just want the abuse to stop. They want their men to value them and to see how much they love them. They want their love to be enough to fix them. They don’t want to get their men in trouble. They need their men for financial support. I run the risk of both of them turning against me when I pick up the phone.

You had better believe I’m going to call it in.