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.  

Give Me A Break

On Thursday afternoon, I saw my 59th doctor, a neurosurgeon. At least, I think he was #59. I don’t feel like going back in my previous posts to make sure. I could be like that person who doesn’t want to admit that their birthdays keep happening so they claim to be 29 & holding.

The ride out was long. The conversation with the cabbie was lively. His name was Isaac. I found out he has a wife and five children who still live in Uganda. He goes back every 6-8 months to spend time with them when he has saved up enough money. I can’t imagine having to live like that, my loves living half a world away. He told me about the worst job he ever had (digging pits that were 20 feet deep, 16×16 wide/long with a pick ax and then having to haul away the dirt himself because there was no machinery). The pits were for storing water. We talked about what shocked him the most when he moved to Minnesota the first time, which was snow (before global warming kicked in, the state used to get dumped on so that sometimes the snow would be thigh high) and teenage pregnancy (in his culture, girls would live with their parents until they were married and they never spent time with boys until the marriage happened). We talked about how violent men are towards women in the States, and how women are so accommodating and undemanding of the men, as in, “It’s okay if you don’t work. Here, lemme make you a sandwich and buy you a house.” See? Lots of sharing.

In my appointment, I first talked the physician’s assistant through everything and demonstrated how my symptoms disappear when I tilt my head parallel to the floor. He asked if I had seen the one doctor I had asked to see, and I said I hadn’t. He asked why, and I said, “Because he said there wasn’t anything wrong with me.” The PA couldn’t hide his bafflement. He said it was obvious that my ventricles were completely gone. He did a few of the standard neurological tests like having me squeeze my eyes shut, follow his finger with my eyes, push and pull his arms, etc. Then he went to get the neurosurgeon.

The neurosurgeon came in and after our introductions, he said he had talked to my neurologist. He mentioned that they thought I was overdraining, and I shot that down immediately. I told him that my lumbar puncture came out with a high opening pressure and I hadn’t had anything surgically done since then. I also told him that I had a leak for an entire year so I know the difference between overdraining and underdraining and they are completely different sensations. For me, the underdraining always brings vertigo, fatigue and the facial droop. Overdraining will never bring paralysis for me; instead, I get the tire-iron-beating-me-in-the-skull pain. 

We talked about the fact that there hasn’t been new shunt materials in ages. We talked about the near-impossible task of finding materials that I won’t be allergic to since I’ve had so many already and I’ve reacted to them.

We also talked about the mass that’s growing on my right side. I asked him if it was at least possible to take that out. I’ve been having pain on the right side that radiates down my neck, and if it’s killing brain tissue and turning it to jelly (which it is according to the MRI), then I’d like to get rid of it. However, because of where it is – in my cerebellum – it’s in a bad spot for a craniotomy. As of November it had grown to about the size of a quarter (not sure what size it is now). 

The neurosurgeon doesn’t want to operate on me at this point. He wants to repeat the upright MRI in about six months to check the size of the mass. He expects it to interfere with my coordination; it might be what’s causing my legs to jerk uncontrollably right now.

So, that’s the plan. Follow up in six months. No surgery right now. Wait for the mass/tumor to get bigger and my symptoms to get worse.

Luckily the same cab driver drove me back – he stayed nearby so it wouldn’t be a long wait for me, thank goodness. The office was really way out in the middle of nowhere by city standards. But the ride back was completely different. Isaac was trying to get me to talk, but I couldn’t. I was overwhelmed and upset, and trying (but failing) not to cry in front of this total stranger. It was just a few sniffles, not an ugly cry, thank goodness. 

That evening I got home and received a notice that my primary care doctor is leaving the practice (and maybe even the state). During our last visit in March she had tried to talk to me about palliative care, but said she would wait for me to decide.

Just so I don’t lose my mind, I have to stop pursuing another opinion on the neurosurgery side for the time being. I’m getting a lot of well-meaning advice about how I should just “stay strong” and “keep going” and “don’t give up.” Honestly, though, I’ve been going at this for nearly seven years. This isn’t fibromyalgia, which I’ve had for 20 years – and I’m not knocking anyone who has it, it’s a beast; and this isn’t Hashimoto’s, which I’ve had for 12 years and again I’m not trying to put anyone down, but this is a whole new level of sick. I was able to work through that shit, even if I had to sleep after work and sleep through weekends. My brain is literally being crushed and I have a mass that’s growing in my cerebellum. There aren’t good days and bad days. I need a break from having to be my own advocate for this really rare orphan disease as I drag my sick ass around from neurosurgeon to neurosurgeon to try to convince them that what they are seeing is real (because it’s right there on the MRI).  

In the meantime, I have plenty of other things to keep me busy and other doctors to visit. We just won’t be tapping into my skull right now.

Failure Or Fun? You Choose

I get a lot of flak for my dating life. Well-meaning friends and family have tried to keep up with the names of the men I’m dating, and I tell them not to bother, because they won’t be around long. I also deliberately avoid family photos. It means that I’m often the butt of many jokes, which admittedly sting from time to time. But my refusal to settle means that I continue to avoid divorce, too. I always end up with good stories.

Here’s the perfect museum for me, and people like me: The Museum of Failure. Of course this has to do with the world’s worst innovations and not relationships, but these are gloriously bad. That shocking facial mask?? OUCH. I had my face tased for a test, it’s not pleasant. I would not buy a device and do it willingly on a regular basis. What the what…?

And the Colgate lasagna…well, this year there was an ad for toothpaste that tastes just like a Burger King Whopper, but that was an April Fool’s joke. Trust me, you do not want this unless you are going to be single forever. And not talk to anyone. Ever. And not get laid. EVER. No.

If you haven’t had the pleasure yet, one of the items included in the Museum of Failure is the Bic for Her pens. It’s not because the pen itself is dysfunctional. Bitch, please – why the fuck would you market a pen as only “for her”? Talk about trolling, Amazon couldn’t keep up with erasing the “reviews” fast enough, so there’s a ton of material out there that you can search for, but here’s a taste.

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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.

Anything But That

Late last night I was watching Netflix or catching up on Post Secret or something or nothing…I forget. It doesn’t matter. A lot of people are talking about what happened in the city near where I lived for five years in the middle of Minnesota.
Stabbing in St. Cloud

The off-duty officer featured in this news story is from the neighboring town where my mom has had her business for the past 21 years, its population is 1,000 on a good day if you include dogs on that count. I dreaded reading the news as it was unfolding. I was saying to myself, “Please don’t let the attacker be a Muslim Somalian, please let it be some dumb redneck asshole.” After moving back to Minnesota I had heard some dumb redneck assholes complaining about how the Somalians were making trouble in St. Cloud. I had even unfriended some former classmates on Facebook because that person was posting faux “articles” about how gangs of Somalian teenage boys/men were running around and attacking women and beating up men and planning on blowing up “good, hardworking farmers” in the area, but that the newspapers weren’t telling anyone – all very inflammatory and untrue.

I hate that the young man who carried out this violent act was a Muslim and a Somalian and his family relocated to Minnesota as part of a refugee program, because it’s exactly what every paranoid and prejudiced person in the area needed to see in order to get worked up into a frenzy. My heart sank as the details became public knowledge. Already I’m seeing these posts saying “Fuck Muslims, they all want to kill us, so we have to kill them first” and “That’s why we all need to carry guns” and “They need to go back home” and “See???? They’re no good!” One person suddenly represents a billion – at least, that’s true according to one former classmate who first said she had never seen any violence from any other religion, then said she never saw violence like that from any present-day religion, then said she didn’t see it from any present-day religion in the United States, then said she didn’t see it in any present-day religion in Minnesota after I kept challenging her with examples every time she changed her answer. Finally she deleted the post altogether; I imagine I’ll be booted from her friend list soon since this is not the first time I’ve called her out on her prejudices.

One of my high school classmates is now a school administrator in that city; she posted on Facebook that she is concerned for her students, because of course she has Somalian children in her school. Her concern is two-fold. First, the children will feel pressure from the other children, because the other children will be influenced by their parents. But then the Somalian children will also have prejudice directed at them specifically by adults who are completely shameless.

My thoughts on this situation: It has to be incredibly difficult to move halfway across the world to a small, isolated city where work is sparse, and you are pretty much universally hated. There isn’t much for a young man to do and if he is approached to join something that gives him purpose and he is promised eternal glory, well, that sounds fantastic, doesn’t it? He’s an easy target for recruiting. It’s complicated. I’m not surprised, but I’m incredibly disappointed and worried that this event will send that region into pre-civil rights era discrimination.

Pay The Toll To The Troll. The Price? Your Soul.

I don’t have any idea how often this happens, or who determines it, but supposedly, Mercury was in retrograde as of Thursday this week. Why don’t frogs just rain down from the skies and we can all just be done with it? No, the psychic attack is much more stealthy, I think. The back of my neck aches. My gums and mouth burns and everything tastes metallic. I fervently wish that Facebook incorporated a disgusted eye roll emoji in their current six options, up from the original singular thumbs-up option. My inner dialog changes: Get out of my way. Stop kicking my goddamn cane. Your perfume smells like cat piss. I’m not waiting 45 minutes this time before calling in to see if they forgot me again, I’m only waiting 30. I am going to scrub my fucking toilet until it fucking sparkles.

Even before Thursday hit I could feel the earth boiling, and my mood was cooking right along with it. I encountered my first troll on Tuesday night. A friend created a private Facebook group so that (mostly) she and the rest of us could say things that couldn’t be said unfiltered in front of a wider Facebook audience. The creator also uses the page to talk about her new grandchild, so obviously it’s not as restrictive as she originally intended. Anyway, a mutual friend was going through a rough patch with her boyfriend and had already talked about it at a coffee shop reunion the week prior, so when she posted in the group, she was just looking for further confirmation that she wasn’t being too harsh in her judgment; after all, when you are the one in the situation, it’s difficult to be objective. This jackass dude pipes in and starts criticizing her and tells her that she’s probably not communicating correctly or enough with the guy she’s in the relationship with – not at all helpful.

Knowing what I know of my friend, and knowing what I know of the guy she’s dating, I don’t hold back on the troll. First I tell him that she DOES and HAS communicated clearly what her boundaries are and that they have been violated repeatedly. Every point the poster or I bring up, the troll says we’re wrong. Then the troll starts talking about how this always happens to him, that he’s always attacked for having a “different viewpoint from most everyone else.” I told him then that it’s because he’s condescending and he has contradicted everything that the original poster and I have said. He said “No, I haven’t. Tell me where I have. I genuinely want to know.” So instead of turning the post into everything about him, I tell him to go back and read. His reaction is to laugh. Obviously there isn’t anything “genuine” about this jackass. The final straw is when the troll claims that we shouldn’t be “defensive, that he is only being inquisitive.” My response was, “You’re not inquisitive, you’re correcting both ___ and I, so that does not constitute a “different” perspective as if it somehow elevates you, it just makes you repulsive.

But then the owner of the group starts posting paragraphs about how we’re supposed to play nice. Then there’s more posts about how disappointed she is about our behavior and how she wants to shut the group down…but she doesn’t, because other people chime in that despite the fact that I’m a bad apple, the group is a “good idea” and some people claim it’s so great that she should “go global” with it – as if talking behind backs is a new concept. If that’s the case, I’ve got some oceanfront property in Arizona to sell to them. Lots of sand.

Troll #2 happens the next day, when I talk about this conversation. He listens for a few minutes, then bursts in with, “I HATE MEN!” As if I, Chelsea, hate men. I don’t. I do, however, hate men who: Lie, cheat, steal, are alcoholics/addicts, are abusive, are lazy, are filthy, are racist, are bigots, pollute, smoke, chew, are narcissists, and hate animals. I’m sure there’s more to the list, but that covers it for now. By the way, Troll #2 fits into quite a few of these categories. Hey, does someone smell butt hurt?

Troll #3 is on Thursday, the big retrograde day. I am pulled into a discussion about racism and white privilege. The person who tagged me is Native American, and the other person is white (and just happens to be an editor for Bloomberg and fancies himself to be an expert on the world and all experiences, like all white guys). The Native American wanted the privileged white dude to know that every other white person didn’t share his smugness. What it boils down to is that the white guy claims that no matter what, all people suffer, so racism, sexism and bigotry don’t actually exist, and we should just get over it. The examples I gave him – white men kick my cane when I’m in public, but women and just generally people of color don’t kick my cane; or white men shoulder check me – probably doesn’t happen, or if they do, they happen because people are just being shitty to me and it doesn’t have anything to do with privilege. He told me I needed to be friendlier (as in, “You are a woman, so you owe it to me, a privileged white male, to smile at me”), so I told him he needed to stop being a dick.

I’m not sure what the cure is. I don’t know how long this shit storm Mercury started lasts. Mercury is an asshole.

Of Saints and Sinners

I don’t drink, I don’t smoke, I don’t use drugs (not even the widely accepted green stuff); however, if I could snort chocolate, I probably would. In fact, I’ve heard that the latest craze is snorting unsweetened cocoa. Yes, it’s a thing. But what I’m referring to is more like my love of M&M’s – relatively harmless in the grand scheme of things.

Last year when 23 & Me was still mired in legalities regarding providing medical results in their gene testing, I had my genes tested because I knew eventually they would either 1) be able to find a way to package the results about the health stuff in a way where it would be understood that it was not actual advice, or 2) we would have raw data forever but it would be a starting point for me to take back to my doctors. So I got in on the action while the price was reduced. Just two months after that, they were able to legally follow the fore-mentioned #1 and also increase their price, but my info was grandfathered in, so it was a great situation for me personally.

This testing confirmed I had the addiction gene. Specifically, the results indicated that I would gain no benefit from developing a drinking habit. (Really, who does?) But certain people are definitely more vulnerable to addiction than others. I know I have that bug. Every once in a while I feel it tugging at my corners; in my 20s I had built up a tolerance to alcohol and it would take a dozen hard liquor drinks for me to perceive a feeling a drunkenness. What else could I become addicted to? Being pursued by men. Lipstick. Perfumes from Black Phoenix Alchemy Lab. I’ve managed to curb all of these, either cutting them out completely or limiting them severely. I know their price, either in dollars or with the price of my soul.

I’m bringing up addiction because it has claimed my relationship with The Saint Paul. Addiction brings with it deception, half-truths and deliberate omissions. I’m not inclined to list what his addictions are, but I discovered one of the five on our first date. I warned him early on that if I felt it interfere with our relationship in any way, it would not matter if we were 10 weeks or 10 years in, I would not hesitate to say goodbye.

As our relationship progressed, he tried to push the boundaries of my limits with what I would accept. One weekend I chose to ignore it because I was struggling so much with pain and unhelpful doctors that I needed comfort more than I needed to enforce respect. Later, other addictions became apparent. I started actively watching for evasiveness, because I realized that this was his go-to tactic when he felt cornered. I also completely lost trust in his ability to be my partner; his actions did not match his proclamations to support me, because in reality he always waited for me to take the lead and take care of everything.

This past week we did not spend time together. I rested a lot because the week before we were together every day because of non-stop activities, and then I wrapped up the week by spending time with some long-term friends. I had traded texts with him and asked him what he had done with his time and received no answer. I took this to be a deliberate, cowardly omission, a way to avoid telling me what he had been up to because he knew I wouldn’t like it.

I did not pry or send repeated messages. Instead, I went to the stash of brown bags with handles under my sink and began assembling his belongings from my apartment.

Tonight he confirmed my suspicions – he didn’t answer my question because he was doing something this weekend that he knew I wouldn’t like and broke his vow to me. It was just a formality that I asked him if that was the case. I had already mourned the loss of our relationship Saturday when I was met with radio silence. It was actually the sound of the other shoe dropping.

I encouraged him to seek counseling. I told him that I did not want to be “friends.” It would be far too painful for me to be the asshole handing out the advice that won’t be listened to, even if my advice is sought out and makes sense. I can only hope that his fear doesn’t paralyze him and that he pursues a better life by letting go of his demons.

Happy Anniversary

Exactly one year ago today I got on a plane and moved from Phoenix to St. Paul. According to the dust on my shelves, that’s the last time I dusted as well.

The first six months were difficult. I was going from doctor to doctor, trying to find any that wouldn’t turn me away. I couldn’t drive because I lose about 80% of my vision while I’m upright for a long time, so I spent about $500 a month just on cab fare alone; when I wasn’t going to doctor appointments, I simply stayed in my apartment.

It took me a lot to where I am right now: I have at least a primary care doctor, I have had 3 months of physical therapy for the pinched nerves in my shoulder and hips, I have a disability attorney (but probably no hearing until July or later 2017), and I now use the short bus and a cab company that is contracted through medical assistance to get me to appointments. I also have an incredibly supportive boyfriend.

There are still some black holes of missing pieces. One: I still don’t have a diagnosis. Two: I don’t know what in the hell I’m going to do about my shunt.

June 16-19 was the National Hydrocephalus Association conference, and I never would have been able to attend if it wasn’t right here in my back yard. I had decided that I was not going to be shy. I had also decided that although it was nice to meet other patients and commiserate, I really, really wanted to pick the brains of the researchers and doctors and manufacturers of the shunts.

At the very first speaking presentation, a researcher spoke about the work she has been performing regarding shunt occlusions (blockages). I raised my hand and first asked if the study began when the shunt was still in the patient (so they could figure out if the drainage tip was stuck somewhere, like a drinking straw that’s clogged by a large piece of fruit or an extra thick shake) or if the shunts were studied after they were removed, because I tend to immediately make 20 years worth of scar tissue in 2-3 weeks and clog my shunts very quickly. She indicated that she tests the shunts only after they are sent to her post-surgery, and that she was definitely interested in my shunt(s). I got her business card and told her about imaging that has been developed in Scotland that piggybacks off of current MRI and CT scans but is supposed to be much more accurate, and it just so happens that she is supposed to travel to Scotland in two weeks. In another talk she gave much later in the conference, she mentioned autoimmune diseases, and I’ll be seeing a doctor that specializes in mast cell disorders next week; I’m going to speak to him specifically about my issues with the shunts and about contacting her and speaking with her regarding shunt rejection. Not a bad start for networking!

But with the good comes the not so good. Another talk I attended was facilitated by a neurologist and a neurosurgeon who were experts in normal pressure hydrocephalus. That is one of my placeholder diagnoses and they kept talking about enlarged ventricles on MRI and CT scans. I asked if it was possible to get that diagnosis without the enlarged ventricles, and they said no. I talked to them afterwards and quickly covered my symptoms and demonstrated my unusual ability to move the fluid around in my brain. They actually became very condescending and a little pissy, asking if I had considered the Mayo. I thanked them and left the room.

At another session, there was a representative from the Social Security office talking about the process of filing for disability. He opened the session by saying that he actually never handled disability cases where health was involved – I mean, when it’s a health conference, why send someone who is knowledgeable? I raised my hand during this one too and asked two questions: 1) Is it correct that since my request for a hearing was filed in early February of 2016, it’s pretty backed up and I shouldn’t expect a hearing to be set until July or August of 2017? and 2) I was told that even though I can’t see well, that my arms and hands still work, so I should be able to get a job. What criteria is used to determine whether I should be employed when my records indicate I should be laying down for 20-22 hours a day? He said, 1) It’s not unreasonable that the hearing would take that long to be set (and I answered that maybe it’s not unreasonable to him, but it’s unreasonable to me), and 2) It’s not just my inability to see or be upright that’s considered, but also my education and my age, so yes, no matter how impaired I am, I may be “too young” to be disabled. That absolutely floored me – no wonder I have to fend off assholes telling me that every day, because that’s the idiocy that the social security office perpetuates every single day.

One session was put on by the Metropolitan Center for Independent Living right here in Minnesota and a particularly energetic and passionate woman dedicated to helping people find the best and most resources available. Of course I raised my hand and said something to the effect of, “Dude from the SSA yesterday said that even though I am impaired when I’m upright, I can still use my hands and arms and I’m only 42, so of course I’m going to be denied. Does this seem correct to you, and would you deem needing to lay down flat 20-22 hours a day a ‘reasonable accommodation’ to request of a workplace?” (In other words, can I lay on a hospital gurney while I’m ringing people out as a cashier at Target?) She rolled her eyes and said that she was told a while ago that when dealing with the SSA, never to apply logic, because what they do defies common sense. She also said that one guy was told by the SSA that he should be able to find a livable wage somewhere “folding napkins” because that was all he was capable of. I asked if there was ever any communication between the SSA and her office for them to base their findings off of, and she said absolutely not.
While we were waiting to be picked up by the short bus at the hotel in downtown Minneapolis where the conference was taking place, there were plenty of people partying and women wearing the most ridiculous heels and short skirts because the Twins were playing the Yankees at a home game. One drunk hanging with his two very drunk buddies began to loudly read my shirt, and so rather than roll my eyes and be pissed, I invited him to read the other side of my shirt. His immediate demeanor took on the tone that he was going to make fun of me, but after I gave him a brief history, all he could say was that he was sorry, and he doffed his hat to me.

Through all of this, The Saint Paul weathered some really dry presentations, and probably learned more than he ever wanted to. However, when I met his dad and stepmom for the first time on Sunday night and they began to ask me questions about my health, he answered them exactly as I would have. The Saint Paul really takes all of this to heart in addition to reminding me that we are a team and that I no longer have to do everything on my own. I mean, man, he got me paper towels because he noticed I was running low on his own – he didn’t even have to ask, and I didn’t have to tell him! Forget “don’t sweat the small stuff” because it’s the small stuff that counts!

One of the sessions I wanted him to attend (while I was in listening to a much heavier topic) was about caring for the caregiver. All of the men in my immediate family have had to put their own health and happiness on hold because my mom and sisters have had chronic and severe diseases. The Saint Paul believes he can handle whatever happens to me, but I warned him that things can change suddenly and completely and permanently for either he or I, and even with the best of intentions, it’s absolutely possible that he can be so deeply affected by this unnamed change that he’s going to lose his shit. It’s a lot to ask of one person.

So, back to this anniversary: this is also the day a year ago that my sister and her husband brought home their second rescue dog from Secondhand Hounds and renamed her June. Just recently, June has started to mimic her dog brother and put herself on the floor and position herself for belly rubs, something she never would have been relaxed enough to do a year ago. It’s amazing what thousands of dog treats and a loving family will do.
2016-04-12 21.37.08

Yes, All Women

The thing that gets me is that we women tend to carry these emotional burdens as our own secret parcels until someone else recognizes them. This young woman experiences the rarer form of bodily violation: the stranger rape. Through her letter to her attacker and thanks to the outrage that most of us feel over the stupidly light sentence he received, we have all been made aware of what happened to her that night and at the trial. It was especially difficult for me to read that one of the Swedish men who came upon the attack was so upset that he broke down in tears while giving his statement to the police. It gives me hope that not every man is being raised to be an asshole like the rapist obviously is.

In the bigger picture, nearly every single woman I know has experienced sexual violence. In my late teens, one young woman was raped by my friend; I cut off all communication with him despite his pleas. She chose not to press charges (because who would believe her?). My own first sexual encounter was violent – the guy didn’t believe that I was a virgin because “virgins don’t move like that” and he left me cut and bruised everywhere including my mouth. Over the years, various men have told me what I liked rather than listened to me if I told them they were being too rough or actually scraping or cutting my lady bits, and they would actually press or bite harder. I found out an ex-friend tried to force himself on one of my best friends within the last year and was outright pissed because she threw him out of her house. After all, he has a penis and therefore a right to her body is his line of thinking. How dare she tell him no?

That’s the stuff that’s even more difficult to prove. If that young woman can’t even make a convincing case for why it’s not okay for this asshole to drag her behind a dumpster and violate and mutilate her while she’s unconscious, what can the rest of us do with the men that are in our social circles who violate us?

https://www.buzzfeed.com/katiejmbaker/heres-the-powerful-letter-the-stanford-victim-read-to-her-ra?utm_term=.eaY45kj6yz#.qrwMXWGNbn