European Vacation

I’ve been able to make three trips to Europe thanks to the generosity of my friends who live in the U.K. – I met C. when he was a foreign exchange student at the university we attended in 1992-1993. C. has always been really good about keeping in touch with me, so our friendship has weathered 23 years with an ocean separating us. He and his family have graciously played host and tour guide every time.

The first time I was there, C. was still a bachelor, and he and his father shared the house in which C. grew up. Unfortunately C. was not able to request time off from work, so his father A. was my tour guide. A. was a charming Welshman who liked one particular pub, so every day, we went to The Cricketers Pub.

It was mostly older, retired folks gathering midday for their whiskey and beer, but I became acquainted with two men who were a bit closer to me in age. One was Michael; I remember he wore a blue and tan sweater and blushed like a choir boy, and I’m thinking he was in his mid-30s. The other was Barry, who was around age 45, and had an unfortunate run-in with burgundy hair dye that he had hoped would make him look younger, but instead gave him an unnatural purple halo. The other regulars at the pub teased him mercilessly.

While the older patrons and I chatted, I tried to draw Michael into the conversation, but with my brash American loudness, I think I might have been too much of a bulldozer for him. However, I discovered that I unknowingly caught Barry’s eye.

The next day we entered The Cricketers, the barkeep held up an envelope and sang out gleefully, “I have a note for you!” That set all of the elder patrons into squawks and chirps – it seems it was the topic of the pub, something to break up the mundane. It was a love note from Barry. He was requesting the pleasure of my company if I had time during my holiday to join him for dinner.

I left A. at his table and went to a shop to purchase blank notes to reply back. When I returned I sat with A.’s cronies and I wrote back to him that I was flattered, but I had a boyfriend and wasn’t available to date, and wished him well. I think the elders were hoping for a little more juiciness. I left the note with the barkeep.

The next day we returned to the pub, and the barkeep waved me over for another note. Barry said he understood that I was not available, but wondered if we could at least be pen pals. I left another note with my address. I did receive a few letters after I returned back to the states, but did not keep up correspondence on my end, so that was the end of that.

By the time I took my second trip, I had relocated to Arizona and had been working at a large international bank for three years. I worked in the tech area, which in 2006 was still greatly dominated by men. I managed to become acquainted with a woman in my area, S. (Her brother is the one that set me up with his work buddy who was still married and tried to assault me on our date.) We became closer when I changed from wearing blonde wigs to dark red ones; she walked past my cubicle and said, “Oh, that one girl is gone, and they hired another one with the same name.” Nope, I was the same person, just a different wig – but that’s hilarious and something she will never live down.

By the time I made it over for this visit, C. had gotten married to his wife E. and they had a little girl together, K.. C. encouraged us to go to the town center and see some live music or whatever entertainment we could find – the next day was a bank holiday, so he expected everyone to be out, even though it was a Sunday evening. He dropped S. and I off and told us to call when we were ready to come home.

We walked up and down the center, but it was very quiet, and most places were closed. We happened upon an old church that had been re-purposed as a bar; we asked the doorman if it was worth paying a cover to enter. He looked us up and down, told us we were too posh for the bug eating contest that was happening, and suggested we try to find a particular jazz bar.

We walked up and down that street and couldn’t find the jazz bar for about an hour until we realized it was closed for the evening. S. and I ended up at a pub, bought one rum & coke (no ice, of course, because Brits do not put ice in their beverages) and then called C. to pick us up. When C. got there he had a loaf of stale bread with him; he said he wanted to feed the ducks and geese while we were down there. C. pulled into a spot by the river and we grabbed the bread and ran down to the edge. By that time we were thoroughly cold and jetlagged, so instead of tearing off nice little hunks to feed the birds at 11 pm local time, we heaved the whole loaf into the river with a loud ker-plunk that sounded like an alligator made a landing. We were ready for that day and night to be over.

During the 2006 trip we also all hopped on a plane to visit C.’s friend J. in the Czech Republic. We planned it so C., his wife E., their daughter K., C.’s dad A., S. and I could spend some time in Prague in addition to being hosted by J. and her little family at their house.

By that time, A. was elderly and had to be pushed around in a wheelchair – no more pub hopping with him. My friends suggested that S. and I run around Prague on our own since it was our first time in that city, and we could meet up later in the restaurant below our hotel.

S. and I signed up for a tour of the palace grounds and cathedral, as we figured it would be a good introduction to some remarkable history. We bought our tickets and sat in a little bus that would take us to our starting point. After we sat, a man with four henchmen entered and sat directly behind me. They all stared openly at me; the main guy leaned forward and asked me where I was from, visibly trying to turn on the charm. I told him I was from the U.S. He smiled and told me he was from Jordan. Then the men rearranged themselves in the bus seats so we were surrounded on all sides. S. and I gave each other side eyes.

When we arrived at the palace gate to start the tour, S. and I lost all of our cool points because we started swooning over the guards. At one point she and I ran over to one who was standing still as a statue and we both attempted selfies without being too invasive. S.’s picture of the guard was of one eyeball and eyebrow, and my picture was of his very perfect lips and cleft chin. We didn’t feel bad about missing our own faces because he was so handsome. Our tour was timed perfectly because we actually got to see the changing of the guard as well.

Our tour guide was a very short German woman who gave the tour in German and English. At that point I remembered enough German to understand what she was saying.

The Jordanian man and his bodyguards became more bold with me. I’m not sure if he was fascinated because I looked to have green eyes and red hair, but he was convinced I was going to be his next wife. The bodyguards started snapping photos of him standing near me. Imagine if you can a very serious Jordanian man photobombing me to make it look like we were together.

S. and I were creeped out. We tried to stay close to the tiny tour guide, but as stern as she was, we knew she wouldn’t be able to physically help us if the bodyguards decided to snatch me. Susan and I linked elbows and kept moving out of the way of the men. Eventually they tired of the cat and mouse game and started mocking us and imitating us with our arms clasped together.

At the end of the tour, the Jordanian man confronted the tour guide and demanded a refund because he wasn’t allowed to enter a particular room in the cathedral. It ended with him being completely nasty to the guide but finally giving up his demand. After that he turned to me and put on his charm and asked if I enjoyed the tour as if he hadn’t at all been unpleasant seconds before. I simply said “yes” and S. and I linked arms again and took off. No one came after us, so we figured he gave up.

At the end of the day we all met up at the restaurant for some goulash. S. and I were sitting next to the window, and who did we spot? The Jordanian guy with the body guards – they were walking down the sidewalk towards the city center. S. and I immediately dove under the table. Our friends were completely flabbergasted and convinced we had lost our marbles. After peeking a number of times, we climbed back up and told our tale. Luckily, we didn’t see that guy any time after that.

S. and I tried to go clubbing in Prague. We left the rest of our friends at the hotel and went to a place that J.’s daughter recommended. We had to take an elevator to the top floor of a building to get to the club. When we arrived, no one was there, and it was approximately 10:30 at night. The doormen gave us wristbands and said we could leave and come back later when it was much busier. We did, but it hadn’t improved when we returned. S. and I decided we just wanted to dance, so we did. Out of the shadows men converged on the outer edge of the dance floor, basically forming a circle around S. and I as we were dancing. After about four songs we got creeped out and decided to give up and go back to the hotel.

After we returned to England, E. and her daughter K. brought us to London for another mini trip. We were one stop away from the infamous Leicester Square. E. encouraged us to go out to the clubs while she and K. stayed back at the hotel. We went to the square and received many solicitations for the various nightclubs, and we finally settled on one. It was the same as in Prague! Hardly no one was there, and when we decided to say screw it and take over the floor, men came out of the shadows and stood around us in a circle while we danced. That was the final straw. S. and I headed back to the hotel.

When we returned to the town where C., E., K. and A. lived, C. offered to drop us off again in the center for one last night out. We turned it down. S. and I agreed that we were not meant to have wild nights out on that trip, no matter how hard we tried.

I returned to England in July of 2012, three weeks before the Olympics. By that time, C. and E. added a son to the family, J. Little J. was young enough that that trip had to be planned around the needs of the family, so there was no chance of me venturing out for some clubbing. At that time I was more fit than I had been in decades. It’s too bad I couldn’t go out and become acquainted with some British future husband(s). It may have been my last European holiday.

Vacations overseas never turn out like they do in the movies, that’s for sure.

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On Love and Loss

“The Anatomy Bequest Program at the University of Minnesota is is a whole body donation program.” As my family found out on Tuesday night, it is also the largest in the world of its kind. http://www.med.umn.edu/research/anatomy-bequest-program

I have always grappled with organ donation – but only because I’m not able to, ever. I want to. But thanks to all of this autoimmune stuff swimming around in me, and my eyes being damaged from the pressure being placed on my brain from this mystery disease, there isn’t any part of me that is safe to transplant into another person. This anatomy bequest program seems like the next best option. I envision baffling some of the medical students with my weird disease – or maybe they open me up and immediately figure out what the problem was, and it was nothing that could have been detected with scans. My brain will be sliced and sectioned and labeled for its “A-ha” moment, and I’m perfectly fine with that.

I sat with my sister and her little family, and we knew our brother-in-law and another family member were somewhere in the audience. We were in an auditorium on the U of MN campus to watch a show put on by students and staff as a thank you to the family members of the people who had passed and donated their bodies at death. I knew it was going to be a tough night. I could feel the sadness rolling off of the people around me and I immediately started choking up. I had tears during the first performance, a pianist playing a Debussy piece. A little of the tension was relieved when it was announced that a trio was going to perform a Lynyrd Skynyrd song and an old hippie in the section next to me let out a gruff and enthusiastic “All right!”

The performers took a break and a slide show began. Each donor was being shown in pictures chosen by their spouses or families, with Joni Mitchell’s version of “Both Sides Now” playing. I knew our sister was going to be there on the screen very early on alphabetically and the tears came again. After her time in front of the crowd, I just closed my eyes for a while. People around me were sobbing quietly. I have no idea how recent their loss was, but it really doesn’t matter, because we were all there for the same reason. We loved our people.

The performances continued after the slides made it through the L’s; one poetry reader encouraged us to hold hands with the people next to us while she read her poem about hands. I could feel my older sister and I freeze at the same time, uncomfortable with the suggestion. I leaned over to my sister and whispered, “I’m good.” We weren’t the hand-holding types.

After more performances, the slides continued with the rest of the donors. I’m not sure when it started, but as each picture was displayed, these little groups of people would clap when their person was shown. Some whooped a little; one woman yelled out, “We love you, mom!” There was more sniffling and sobbing, more tears. My sister and I were surprised to see a former classmate’s picture at one point – she had died only about 2.5 months prior from breast cancer. I imagined that her parents were somewhere in the mass of people, also proud and incredibly sad.

It turns out that our brother-in-law was just in the next section and so after the auditorium started emptying, he came over to us. He has always been a jokester, so it was especially heartbreaking to see him openly crying. He apologized when he hugged me, which is what we all do when we think we have to hide our pain. He is the one I worry about the most. He is now alone in his big house, a home that has so much of our sister still in it. She had MS and was confined to a wheelchair for most of their marriage, and the house was modified to accommodate a wheelchair and scooter. He cared for her, turned her, carried her when she needed help getting to the bathroom. They were each others’ best friends. He couldn’t even take much time off from work to mourn her because he had used up all of his allotted time to make sure she was comfortable in her last two months while cancer took over.

I know our brother-in-law mourns deeply. I am having a hard time finishing this post because the grief keeps crashing into me in waves, and I have no doubt that he feels it more than any of us. My singular wish for him is that he will be able to find someone to love again when the time is right. I don’t like the idea of him holding onto the memory of our sister for the rest of his life and turning away from another great love, and I don’t think that is what she would want for him either.

I am grateful to the U of MN for having this program that allowed us to come together and celebrate the giving and joyful heart of our oldest sister.

Paper Doll

Warning: Read at your own risk. Adult situations discussed.

Okay, so we know about Mr. Friday Night and his toe and pantyhose fetish. I did him a solid and dressed up and painted my toenails to his specifications. It wasn’t that big of a deal as far as fetishes go – not like he asked me to shear a sheep so we could screw on some real lambswool.

Another guy on OKCupid caught my eye. I was actually looking forward to chatting with him because according to the algorithm, we answered over 90% of our questions the same (or similar enough). His profile had enough funny stuff to show that he had a good sense of humor, and we had a love of the arts, board games and museums in common. Pretty promising, right? So I struck up a conversation with him, and during the course of chatting, I discovered he was a brass player. I’m going to christen him Gabriel.

Gabriel wasn’t very forthcoming with info about himself when I would ask him open-ended questions. He would give me one or two-word answers, or it would take him a long time to answer. Then he started dipping his toe into the sex pond, and he couldn’t stop talking.

At first Gabriel wanted to know if I liked to cuddle, and I answered yes. Then he started asking me about my favorite sexual acts. I informed him that I had a FetLife page and he revealed to me that he did as well, so we checked out each others’ pages. Gabriel then confessed to me that he wasn’t really single, like his profile said – he was separated, and he claimed that he was living with his parents and his wife and kids were living in the house. However, he assured me that there was no going back and that divorce was a sure thing. We talked more about our likes and dislikes, and Gabriel admitted that he had only been intimate with three women. My number is nowhere near his – I mean, I have never been married, and for the majority of my adulthood I haven’t been in a relationship. We had a chat about STDs.

Eventually we worked out a date night. At first it was on the premise of cuddling and a movie. Then it evolved into him asking if we could do certain things. Gabriel also specified what he would like me to wear – which included a skirt, pantyhose and heels. Luckily for him I had gotten two pairs of pantyhose because of Mr. Friday Night, so I could accommodate that request. I told Gabriel that if his penis was going anywhere near me, he had to tell me his last name.

The first time we got together was very nice. We did cuddle, and we both got some action. He reminded me a lot of the guy who plays Kelly Severide on the show “Chicago Fire,” though a bit beefier. When we were done messing around, we laid in bed and laughed and talked, and Gabriel did his impression of Christopher Cross/Michael McDonald/Peter Cetera, which he admitted sounded like the same guy. We discussed his frustration at not being able to find a job that matched his degree, and I offered to put some feelers out with my friends. It’s just the sort of exchange you’d expect with friends with benefits, which is what I assumed this would be, since I couldn’t go on real dates with him.

The second time he came over, Gabriel asked if I could do some very specific things he wanted to try that he had listed on his Fet page. I will just be clear and say that it was stuff he wanted me to do to him, not with him. Gabriel also asked me if I could wear a specific undergarment, and since I had it in my possession already, I obliged. He asked me if I would ever try some of the things that he wanted to, including three-or-moresomes and anal sex, and I told him I had tried them – many times – and I wouldn’t do them anymore. First, I’m not attracted to women. Second, my health problems extend to my bowels and anal sex is painful. So keep in mind that this conversation about my hard limits happened face to face. Gabriel left after what he wanted to happen happened. I gave him a smooch and told him it was okay, he’d get me the next time.

Between the second and third dates, we chatted via text a few times, but it was only late at night, and he would only talk about sex. Gabriel would ask things like, “Do you ever just walk around your apartment naked for no reason?” I told him no, it was never for no reason – usually I was changing clothes or hopping in the shower. Then he would ask me if I was playing with myself. I get weary of being asked the same questions every time a guy talks to me, so I stopped playing along – I didn’t pretend that I was doing that just to make him happy. I even reminded him a couple of times that I was a whole person, not just interested in sexual acts. I mean, for Pete’s sake, we had a lot of common interests.

For our third get-together I didn’t have to wear any specific clothing, thank goodness. We messed around (no p-in-the-v, but honestly, that’s not the only sex act as far as I am concerned), and had another talk about my hard limits. Gabriel said that the next time he came over, he thought it would be nice to just watch a movie, and I agreed.

Gabriel’s texts became further spaced out; sometimes I would send him a quick note to joke about something that popped up in the news that we had discussed. He would only text me to ask me if I was playing with myself. Then he started only asking me one word at a time: “Anal?” “FFM?” “Swallow?” My tolerance level is pretty low, especially if I have to repeat myself. I know what guys think, which is that if they ask the same question enough times, eventually they will wear us women down into agreeing to do stuff. After I said no, Gabriel had the balls to tell me that maybe I would like that stuff if I tried it – as if our numbers were reversed and I had had three partners, and he had…not three.

I finally texted him back to say, “Look, I have tried what you have listed, and I’m not going to do it.” Then I told him, “I feel like we get along well enough, but now you’re listing stuff that we have talked about that I’ve already told you that I am not interested in revisiting. I don’t want to hold you back if you want to find someone to help you check these things off your list.” Gabriel hates anything that is not “Minnesota Nice,” meaning he would have preferred me to agree to do these things to fulfill his porn-driven fantasies, or to lie to him and tell him that I would do them eventually. So Gabriel has cut off all communication to me.

My prediction for Gabriel: He and his wife are going to resume their marriage “for the sake of the kids” after he has checked everything off his list. And they’re going to hate each other.

I have been chatting with another guy from OKCupid who had actually hit me up on FetLife first. Here’s the kicker: he has a foot fetish too. So one of the first things he asked me to wear if we met is a skirt, pantyhose and heels.

My only conclusion I can come to is the reason these poor, deprived men in Minnesota crave heels and pantyhose is because it’s thirty below zero all of the time and it’s not safe to walk in heels in snow and ice. Snow boots are decidedly less sexy.

Please enjoy this song by one of my favorite singers, Rachael Yamagata. Every time a man asks me to dress up to his specifications, I feel like a paper doll.

Netflix ‘n Chill

Minnesota is a pretty great state to live in right now. There’s lots of resources – especially in the Minneapolis/St. Paul area – and a push towards smarter and greener living. Unemployment is super low. I have forgotten what it’s like to be around nicer people (rather than worrying about being shanked), so I find myself thinking often, “Wow, that person is so nice!” Don’t worry, I know about “Minnesota Nice” – but usually I’m on the giving end of it, not the receiving end. On paper, it would appear that I wouldn’t have any trouble at all finding a match, because there are a good number of people with shared values.

However, I’m that person. I can’t go out on dates. I can’t join someone for a bike ride and a hike. I can’t say that I have to work until 6 pm, and then can we meet up for dinner later? I can’t go out on multiple dates with someone and then decide he’s not a match for me, and never have him know where I’m living in case he turns out to be stranger danger.

My only option left, really, is to tell dates they can come over to my place to, you know, watch Netflix and chill. Except every one of them thinks that I want to bang. I don’t!! It looks bad, I know. My apartment is a studio so the couch I have for visitors is in very close proximity to my queen-sized bed, so even if I told a date that I didn’t want to have sex, THERE IS MY BED, calling like a siren song.

I want to go out with men who are active and enjoy movies, wine tastings, art festivals, live theater and traveling, but those are the ones that do a crab crawl backwards away from me. Instead, I get messages on OKCupid from guys like Alex (age 28), who wrote two sentences to me, didn’t answer any of my questions, and then a week later said, “Hey, how about after work we have a lazy evening on the couch and watch shows?” I said, “You mean, ‘Netflix and chill?'” He said, “Does it sound better if I say that?” and I said, “No. I’m not interested in sextracurricular activities.”

On the flip side, someone whose junk has been up close and personal texted me a hello and asked what I was up to, then said that watching a movie sounded really nice. I asked if that was code for Netflix ‘n chill, and he said, no, he really did want to veg out and watch a movie. See? Sometimes men can act like normal human beings and not try to hump everything in sight. I’m guessing we have to put you on a 60+-hour-workweek first, though.

So, anyone wanna come over for Netflix ‘n chill, but not?

What’s Going On With Your Face?

This morning I woke up and said to myself, “I’m going to urgent care.” Not for fun, mind you – I have been having horrendous heel pain in my right foot and haven’t been able to bear weight on it; I couldn’t even stand to rest it on top of my covers to sleep at night. Nothing has helped either, including ice and ibuprofin. Getting my shoes on took seven tries and a few tears.

I also had conversations I’ve had many, many times. The first was with the nurse. As we were talking about my meds and allergies, she said I was lucky to have a cane handy to help me with walking through this problem, and I told her I use one anyway because of vertigo, and warned her that I could feel the CSF pooling and starting to press on my nerves. I had been laying down until right before the cab picked me up, so I looked normal when I first hobbled through the door. She was watching my face as it became paralyzed and asked, “So you have Bell’s palsy, right?” I answered, “No, it’s not that, and it’s not Myasthenia Gravis or anything else you’ve heard of. It’s a rare condition without a name and I can’t get a diagnosis. But that’s okay, I really want to find out what’s happening with my foot right now, I don’t want to unload all of the stuff about my CSF issues on you.” We finished up with the vitals and she left to get the doctor.

He came in, introduced himself, and said, “I understand you’re here for foot pain. My nurse filled me in with that and gave me background on your really big issue. What’s going on with your face?” I explained briefly that it is yet undiagnosed, and that the latest of a series of rejections from the Mayo Clinic to see me came from a neurologist and a neurosurgeon stating that what I had is so rare that they wouldn’t be able to diagnose me or treat me. But then I said again, “It’s okay, I don’t expect you to do anything about that. I would really like to try to figure out what is wrong with my foot.”

I went through a couple of cab rides for nothing, it turns out. The x-ray didn’t show anything wrong with the bones and that’s as far as they could go with imaging. The doctor offered me a walking boot, but I declined – I don’t want to set my foot down at all because of the pain, it’s not a stability issue. Well, okay, that’s a problem too because of my vertigo and penchant for leaning to the right because of my imbalance, but we’re not trying to stabilize the bones. He also offered me some opioid painkillers but I declined those as well. His conclusion: it’s a nerve problem. Unless there’s something wrong with the soft tissue, which can only be checked by MRI. Either way, I have to wait until Monday to see what the next neurologist says.

For the entire time that I was dealing with that, I was getting bombarded by texts from a guy I met on OKCupid. He is an H1B transplant from India whom I will call Quiz Master. Quiz Master is quite a bit younger than me – 28 years old. At first when he approached me online, I was extremely cautious because I am not attracted to younger men at all. He seemed okay, though, because he was actually asking thoughtful and non-standard questions, and he wasn’t trying to get in my pants or show me his penis. Still, though, I knew that culturally we would be very different.

Quiz Master would ask me questions, sometimes four or five in a row, and I would try to answer as quickly as I could, but I’d only be able to type up one answer and he would throw another five at me. He would then say, “But what was the answer to the question I asked you before?” I’d have to scroll through a bunch of stuff to figure out what he was talking about. It was very tedious. And then he’d say, “Now you have to ask me something,” while I was still trying to answer his questions that he insisted that I answer. Sometimes he would message me days later and say something like, “I’m still waiting for your answer.” A couple of times I had to tell him I had no idea at that point what he had asked because we had moved forward with the conversation.

Against my better judgment, I agreed to give him my cell number, because, again, he wasn’t trying to get in my pants. Quiz Master asked if we could meet, so I told him why I wouldn’t be able to go out on a traditional date, though that would be my preference (as opposed to having a parade of stranger dangers through my apartment). Quiz Master first told me that if I went to bed that night, every day that I got up I would feel better and better until I’m cured. I told him that applies to things like having a cold, but has absolutely nothing to do with what I have going on. Then he told me that I had to be positive and that if I keep up my hope, I would be fine. Rather than telling him to screw himself, I told him that he should try that experiment, but that his mission was to make his eyes turn from brown to blue. If he didn’t succeed, then it would be his fault for not hoping hard enough.

So Quiz Master said fine, let’s not talk about that anymore, and then he proceeded to bombard me with questions again. I think he was really embracing his role as an enthusiastic questioner way too much, because he would ask things like, “Are you different from when you were little? Why and in what way? Do you think growing up made you think of things different? How do you think you think different?” (I’m slightly improving the grammar he used – you get the picture.) I finally asked for a break because I really don’t like to text. Quiz Master said, “Oh, but we’re getting to know each other. You are doing fine.” That really grated on my nerves because I wasn’t asking for his approval on my texting skills, I just wanted to take a break from the hundreds of questions he was insisting I answer.

Since Quiz Master also found out that I don’t work, he started texting me all day, every day, for about five days. If I didn’t respond right away, he would send me repeated messages saying, “What are you doing right now?” I started avoiding reading his messages for a few hours so he couldn’t see the “read” stamp. It was taking just way too much effort – he would hound me if I answered, and he would hound me if I didn’t. Then Quiz Master started asking if he could come over. Actually, he was asking if I could ask my parents if he could come over. I was starting to lose my cool. I said, “I don’t live with my parents and I never said that I live with my parents. Why do I have to ask my parents if it’s okay for you to visit?” Quiz Master said that he just assumed that I did because I’m single. <insert eye roll> Huge cultural gap right there.

Then he switched up his questions, saying that he wanted to play a “game” with me: we could say an actor’s name, and see if the other person is familiar with the actor and if they like them or not. I only tolerated about three actors from Quiz Master and then said I don’t like texting all day, every day, and that I wanted to take a break. Again, he told me I was doing “fine.” Finally, I told him that I don’t like to constantly text anyone for hours, and that I wanted to not text with him for a few days. Quiz Master said he wanted to call me then. I told him no, that I didn’t want to talk at that point either, and that I really wanted to get some stuff done.

Quiz Master waited all of twelve hours to start hounding me again. Did I get done what I wanted to do? What was I doing right then? How about a few minutes later? Why wasn’t I answering him???? He’s JUST TRYING TO GET TO KNOW ME. I’M DOING FINE. DID I FEEL BETTER? I MUST BE FEELING BETTER BECAUSE I WENT TO SLEEP. I HAVE TO TALK TO HIM. He was getting really, really demanding.

I started getting a feeling like I couldn’t shrug his arm off from around my shoulders, weighing me down like a yoke. I couldn’t breathe. In fact, I was suspicious that he somehow got lodged UP. MY. ASS. And I just do not enjoy that at all.

Quiz Master bombarded me with texts the next morning again, asking me exactly where I was and what I was doing. I told him that I was at a doctor’s appointment. He offered to pick me up so we could meet and visit. I told him no, I was exhausted and uncomfortable, and did not feel that it was the best time to meet. He told me that it would be a good time to meet. I told him no, I didn’t want to. Then he started asking me the stupid actors’ questions again and insisting that I ask him more questions. I told him that I needed to rest and I didn’t want to text anymore. Quiz Master gave me six hours, then started in again. I seriously wanted to kick him across a field like a football.

This morning, when I got the now-familiar text telling me to tell him exactly what I was doing, I responded by telling him that I no longer wished to pursue any relationship with him, and that I wished him well. Quiz Master then sent me 16 texts about how he was respecting my space but I had to answer him, and we were just getting to know each other, and he still wanted to come over – oh, and, did I think he was trying to have sex with me? I simply wrote back, “Knock it off.” His last two messages to me were that he was assured that he didn’t do anything wrong, and that he wished me a good day.

Obsessed much, Quiz Master? I suppose I’ll have to be looking over my shoulder for a while. Good thing I don’t have a pet rabbit for him to surprise cook for me.

Dating Whitecoats

Trying to find a doctor is a lot like dating. I’ve gone on a hell of a lot blind dates, and I’ve gone to a hell of a lot of doctors. I no longer get butterflies for either. I no longer have a feeling before I meet them of, “Maybe this will be the one.” Nearly all of them have broken my heart.

This week started off with a trip to a new rheumatologist. He was recommended to me by a friend whose mom had seen him, and he managed to treat her for much longer that she would have survived in the hands of another doctor before she succumbed to scleroderma. I read up on him and checked out reviews, and it seemed like he would be interested in solving mysteries. He was a tall, older gentleman with silver hair and a stern face, all business. After we began talking and I produced document after document for him, he began to get quieter, except for repeatedly shaking his head and sighing. I answered all of his questions from memory including lab results. Then he started stuttering. “What – what – what about your MRIs?” I told him the problem was that I had to lay down for them, and the fluid drains off almost immediately, so I don’t feel that they are getting a true picture of what’s happening when I’m upright. Then he started the, “Gosh, I Don’t Know” song.

He finally dropped his pen, turned to me and put his hands on his knees and said, “Has anyone seen anything like this before?” I told him no, and that I had seen a lot of doctors. (My count is 40 to date, including all of the ER doctors that have examined me.) He said it was obvious. Then he asked if I had tried the Mayo. I told him I had been turned down five times including the most recent try on October 2nd. He said, “What in the hell is wrong with them? They’re supposed to be number one in the nation for rare stuff like this.” I told him that I was going to try other avenues, including Johns Hopkins and going to the media to try to get my story out there with the hope that someone would be willing to take my case.

We went through the obligatory motions of the rest of the exam, where I put on a gown and he prodded my joints. I laid down for part of it and he watched my eyes open, and when I sat back up he saw the effects of the CSF pooling and forcing my eyes to droop shut again. I asked him if I could continue coming to his office, even if I saw another doctor, so that I could at least get care for my fibromyalgia because I didn’t especially care for the rheumatologist I had originally seen. He didn’t say anything.

When I got dressed again, he came back in and said, “I don’t have any answers for you. Try Johns Hopkins and see if they will take you on as a charity case since you have no income and medical assistance will only cover the state of Minnesota. I can’t help you.” He wasn’t unkind and I have heard that response many, many times. As I shuffled nearly blind down the hallway, I kept thinking, “This was just another waste of time. Waste of time. Waste. Waste. Waste.” I have gotten better about not crying after every unsuccessful attempt.

So, what’s next? Well, I’ve got to find a rheumatologist who will at least treat the fibromyalgia and not be a jerk. And I have to try to get my stories on local news stations and national talk shows. Everyone keeps saying, “Ellen! Try Ellen! She’s the best!” And I agree that that’s true and her show gives me lots of laughs and smiles, but I’m not sure she is even interested in taking me on, because I don’t have a happy ending. I have sent in a few submissions already. Thanks to the help of my former flame, I’m learning to navigate Twitter and have been trying to get the attention of neurosurgeons and neurologists around the U.S. I have also been tagging the Mayo in tweets about how they determined I’m “too rare” to examine and would anyone else like to take a shot? I’ve started following neurosurgeons and TV stations. I’ve tweeted Johns Hopkins repeatedly. They have a remote referral option that I have to pay for out of pocket, but honestly, I want them to be interested in my case, not just look at me as another number and dismiss me.

I’ve also started following groups that support rare diseases, either with research, treatment or resources. I managed to catch the attention of two of them and they will be publishing my submissions within the next few weeks.

After the unsuccessful visit with the rhuematologist, I sent a message to the neurosurgeon in St. Paul who told me, “Don’t give up. I know it’s been a long time and someone will be able to help you,” asking him if he could refer me to the University of Minnesota to see if I could be studied there. I was told that my case would be sent to the complex specialty care unit; yesterday I received a call and they stated that they wanted to get me in on Monday. I was surprised because I’ve never been able to get in with a specialist without having to wait 2-3 months, but of course I said yes. So I have another “date” Monday.

I also had to talk to my case worker for my disability appeal. I told her that she wasn’t going to see anything new from the rheumatologist, and that I was trying to get into the U of MN in the neurology/neurosurgery unit so I could be studied. She has been super nice to me, but it’s still her job to turn me down for disability. I know I’m going to get another call from Maryland telling me that my case is being rejected again because I don’t have a diagnosis – but it sure as hell isn’t for lack of trying. I’m trying! Seriously, slip into my body for a few weeks, or even a few hours, and you’d cry for your mommy and then tell me to take all my disability pay plus a little extra for having such a hard-ass time.

Finally, I’d like to say in closing: Screw you, Mayo Clinic. I realize that I’m not a wealthy billionaire and I’m not the Dali Lama, but you should take my case and figure out what in the hell is going on. As far as I’m concerned, you reputation for being the best for neurology/neurosurgery is completely undeserved. You just made my life 1,000 times harder. You were my worst no-show.

Put Some Warrior In You

Whenever you are feeling a little down, do a little haka in your living room. Guaranteed to make you feel invincible.

(Bring your neighbors cookies afterwards to apologize.)

Cupcake or Cesspool?

I reactivated my profile on OKCupid in a fit of…well, frustration, loneliness and boredom, I suppose. I hate being stuck in my apartment. I used to travel extensively, host happy hours, go to art and music festivals, take swing dancing lessons and volunteer. I know it’s possible to find someone who has the same interests, especially since it’s so easy to connect with shop for people over the internet. I’m not looking for someone to be my sole source of entertainment and am trying to keep an open mind because of my unique situation. But I’m also reminded of why a lot of these guys have been on the site for over a year, or two, or four – because they can’t act like normal human beings.

Following are some of the exchanges I’ve had, word-for-word, in the last 24 hours.

First there’s the one who was born the year I graduated high school:

23-Year-Old Guy: Your really cute! 🙂 How are you?
Me: Thank you, you’re really cute too – but I’m much older than you!
Him: That’s fine with me! Are you okay with it?
Me: Well, I am kind of laughing – when I was 22 I was dating a 48-year-old. Now that the roles are reversed, I’m not so sure about it.
Him: So where do you work?
Me: I don’t work because I’m dealing with some major health issues.
Him: So you dated an old man when you were young? LOL
Me: I did! He was pretty wealthy so I joked that he was my sugar daddy, but I only let him buy me dinners.
Him: Haha your kinky! So how was the sex?
Me: What??? Why would you say I’m kinky?
Him: Did you guys have sex?

At this point I let this conversation drop. I’m still not sure how letting someone buy me dinner translates to kinkiness, but I didn’t feel like I had the patience to find out.

So here’s one from someone who is clearly going to try to scam me out of my life savings:

45-year-old Man from Louisiana (supposedly):
Him: Hello, how are doing today
I am Kelly William from United State and you
like to get acquaintance with you

Blocked. It’s obvious there’s some Google Translate going on there.

Here’s a quick one from California:

25-Year-Old Guy: Your a sexy gorgeous mama! 😉 U got kik?

<sigh> No, little boy, I don’t. I’ve got OKCupid and I don’t want to see your penis.

This one claims to be currently in the U.K., working on a film project, but due back in two weeks:

43-Year-Old Man: What are you looking for on this site? As for me I’m looking for a relationship that will lead to marriage.
Me: I would like a serious relationship too, but only with someone who is truly a match.
Him: Yeah you are right we can get to meet soon, what are you looking for in a woman? As for me am looking for honesty and a GOD fearing woman, a woman that is caring and knows how to treat her man right.
Me: We are going to seriously clash on religion. I don’t believe in religion or “God.”
Him: Thats okay. When I get back we can meet. Where do you live?

Um, no, Stranger Danger – go back to your 1950’s household. There’s a FetLife group for that and I’m not in it. I’m also not looking for a woman.

How could I possibly turn the next one down? He’s very determined:

44-Year-Old Man in California: Your attractive looking and I’m interested in you. I am willing to relocate.
Me: Thank you, although we would clash on religion. (Another bible thumper.)
Him: I would go to your church with you.
Me: I don’t believe in religion or church. (WTH, man, read my profile! I spell it out.)
Him: I would shovel snow for you. I would buy a snowblower for you.
Me: That’s not necessary, I don’t have to take care of snow removal.
Him: We could go to dinner out or we could order pizza.
Me: Is dating difficult in your area?
Him: Yes

Clearly, Creeptastic Man.

And then there’s the one who can’t figure out why he’s bored and lonely:

41-Year-Old Guy: Hi
Me: Hi
Him: I’m bored and lonely.
Me: Have you heard of MeetUp? They have events every day, lots to choose from.
Him: Where do you work?
Me: I don’t work, I am dealing with some major health issues.
Him: Can I come over? I’m bored and lonely.
Me: No, we don’t know each other so I wouldn’t be comfortable with that.
Two days later:
Him: Hi
Me: Hi
Him: Where do you work?
Me: I don’t work right now, I’m not well enough.
Him: Oh yeah. Can I come over?
Three days later:
Him: Hi
Me: Hi
Him: Where do you work?

<SIGH>

So here’s my take on OKCupid: The cupcake part of it is that it’s packaged to be very cute and friendly, like your very own serving of happiness topped with sugary frosting and sprinkles. The algorithm gives you the probability of being a match with someone according to your likes, dislikes and answers to hundreds of questions. I don’t think I’m alone when I see someone actually has a 90% or higher compatibility score with me and I get a little jolt of hope. The cesspool part is that all of these guys don’t know the difference between your and you’re (and I’m pretty sure yore would blow their minds), there’s money scammers, desperate men who are offering to relocate without actually meeting in person first, boys who want to talk about and show off their penises, and bulldozers who WILL MAKE YOU FIND RELIGION. I keep hearing about these fabled people who met their spouses online, but how did they get past the creepy, stinky cesspool??

I added another paragraph to my profile that states:
“If you are going to hit me up to chat, you’ll have more success if you talk about our common interests. If you just say “hello,” or you copy and paste a standard message that obviously is sent to everyone you contact, or you want to talk about your penis, I’m already not interested. No, really, put that away.”

And since I signed in for a few seconds to copy that paragraph, I got five new messages saying “Hi” – and that’s all.

<SIGH>

Send Up The Bat Signal

From Thursday morning until today at around noon, I was so excited. I felt this enormous surge of energy, and I wanted to do everything – go to the movies, go on job interviews, retrieve my car from where it’s being stored and drive around, go on real dates, go to Costco and buy 30 rolls of toilet paper. I felt like my old self. For 108 hours, I felt capable. I was sitting and standing and walking just like everyone else. The vertigo was still present but I wasn’t running into furniture or doorways.

The weather has been unseasonably warm, so I went on a few walks around my neighborhood for the first time since moving here. The last one this morning was to walk a few blocks to Redbox to rent a few movies. And just like that, the drooping face appeared again. As I was approaching my door, my steps became slower and slower, and all the while I was chanting to myself in my head, “No, no, please no.” I often have to try to explain the sensations to doctors and nurses who haven’t seen me before, and this is the best I have come up with: It feels like a big slab of raw steak has been laid across my forehead and left eye. The weight of it and the paralysis makes it impossible for my eyelids to stay open, and if you look closely, you’ll see my left eyebrow twitching because the nerves are misfiring or losing their connection completely when I try to move it. Everything becomes very blurry and starts swimming in front of me, kind of like what movie directors do to try to portray fainting from the viewpoint of a character. I lose depth perception and peripheral vision. I also become immediately exhausted.

I had seen my sister before I went on my walk and we were discussing the mystery of the symptoms lifting. After I got back, I had to send her a text saying, “Fuck it. Sell the car. It’s back.”

Today we talked about how this has been a really tough year. We lost our oldest sister, and then just a few days later my friend died, and now our uncle is running out of options to treat his stage IV throat cancer. My sister has health issues herself, and though she has told me numerous times that she is happy to help and that she knows this has been difficult for me too, I am fully aware that I am a burden to her. I don’t want this to be my permanent reality.

Some of my friends have gotten involved with getting in touch with people in the TV industry to see if there are news stations or shows that would be willing to feature my story. (I told one person that if I got on “Ellen,” I don’t want a car or cash, I want a doctor.) An uncle’s girlfriend is a freelance writer and we have been in contact with countless publications; I have been turned down by all of them because they want a happy ending. I am still hoping that I can get some exposure and a fire will be lit under someone qualified and knowledgeable enough to deal with this shit.

Oh, and Mr. Friday Night is done. When he was here, he asked me over and over again if he could return on Saturday for some more nookie. Late Friday afternoon, he texted me things like, “Miss me yet?” and “I’ll be back, I really like you.” I never asked him for another session, so this isn’t me baiting him to push him to say that he wants to see me again. Late Saturday afternoon I texted him asking if he was still planning on coming over, and his response was “:))))).” That was his last communication. So I sent him a text this afternoon telling him that he shouldn’t beg to come over and then act like I died – he needs to be more up front and honest with the next woman (Bye, Felipe!). It’s depressing that he got any of my good hours. Fear not, though – I have been chatting with others on OKCupid and initiating them into my weird and wacky world. One guy is 14 years younger and a great conversationalist but he’s so young. I may use a cane, but I’m not comfortable with being a cougar.

As disappointing as today was, I am happy about one thing: a ghost from the past contacted me through Twitter. I’ll call him Socrates, as he is a deep-thinking man. Socrates found me just by chance when he was searching for a former client’s info, and when I saw that he was following me, I sent him a message. I have actually been trying to look him up for the past few months. Socrates and I met when he was going through an especially difficult time; his business had folded, he was nearly penniless, his family was spiteful and sucking his soul dry, and he didn’t have access to healthcare.

I enjoyed his company despite the turmoil that burdened him and seeped into our time together. Socrates is incredibly intelligent. I could actually hold conversations with him that did not center around sports or the weather. He is much more concerned with the human condition and continuously trying to improve himself and the world around him. But the one thing that broke my heart, as it always does, is hearing that I am fine to have sex with but that person isn’t going to get into a relationship with me. And Socrates gave me that speech. I can’t help but take that personally, no matter if I also realize that it’s not the right time or the right person for me. Some day I’d like for some man to tell me that all of my parts are wonderful, not just the sex parts.

So we entered into a true friends with benefits arrangement. I helped Socrates to pack up his apartment so he could move. I found a sliding fee scale clinic so that he could try to get the healthcare he so desperately needed and wanted, just so he would know that there were options. I also gave him blowjobs he rated as, “Ohmygodthatwasthebesteverthatwasaten.” Socrates was always open and vocal with me, never just saying what he thought I wanted to hear, because he values authenticity over flattery.

Our last contact (and correct me if I’m wrong, because I know you’re reading this, S.) was over email in 2007. Socrates was overwhelmed with every part of his life and not interested in communicating with anyone for the foreseeable future. I was left to wonder if he was okay and how he was surviving because the messages simply stopped.

That brings me to today, and our renewed connection. I am relieved to know that he is in fact okay, and that he has done some serious work on his soul to try to repair some of the damage and to release the parts that are past rescuing. Socrates is also married! He and his wife seem to be true partners and supportive of each other, which is the best anyone can hope for in a loving relationship. Socrates is now in a position to help me with spreading the word about this crazy disease, and I am gratefully accepting.

The Weirdness Of You

Let your freak flag fly.

The hardest thing to do is to find someone who loves your weirdness.

This week I initiated another person into FetLife. My Friday date has a pantyhose and toe fetish and before coming over, he put in very specific requests for dark red toenail polish and nude pantyhose/stockings. I asked him if he had a profile on Fet. He had to look it up! I would not be surprised if he suddenly appeared. However, his fetish does not seem to be hardcore – he enjoys other acts as well, thank goodness. Main reason: I’m not a foot model. In fact, some have called my feet “Flintstone feet,” not exactly drool-worthy. All of this week I have been soaking, scrubbing and grinding away calluses because I was very aware that these toes could end up in his mouth – and they did.

As far as fetishes go, his is pretty harmless. However, I still had to accommodate him and find pantyhose and nail polish. I didn’t give him a list of anything that I required. But so far, he has won points with me because he isn’t telling me that I’m not doing “enough” to get better, or making me feel like a loser for not being able to work or really, just leave the apartment for more than 30 minutes. He also didn’t freak out when I told him that I had to wear wigs. That one is a big one! The real test will be to see if he sticks around and/or comes back again in the near future.

Something strange is happening with my body. I’ve been dealing with these crazy symptoms since my shunt failed on April 10th, but for the past three days without changing my medications, diet or supplements, I have been able to be upright for hours. HOURS. Like a normal person. I’m still having some issues with vertigo, but the pressure isn’t so strong on my brain that my face becomes paralyzed like it usually does when I’ve been upright for 30 minutes.

I honestly don’t know if the change is because it’s not terribly hot or cold. I don’t know if it’s because the humidity is relatively low for this part of the country at this time. I don’t know if it’s because the air pressure is at a certain level and is holding steady. I don’t have a clue.

But because I don’t feel like I’m dying, I suddenly have energy – at least, I’m back at fibromyalgia-style energy. I feel guilty for not getting in my car, which is currently being stored at my sister’s house and being prepared to be sold, to go to a concert, or the library, or the grocery store. I want to go out on dates like a real person! I have even thought about working because when I have this energy zinging through me, I hate to be idle. (Honestly, that’s what gets me into trouble. I either get really vocal on Facebook or I chat up a bunch of men on OKCupid.) But I don’t know why this is happening, and I don’t know how long it’s going to last.

My reminder of that is the notice I got from Metro Mobility letting me know I am eligible to use it until May of 2019. It’s a service set up through the bus system in the Minneapolis/St. Paul area for people with disabilities who can’t use regular buses. Normally I can only take the bus if my aunt rides with me and takes care of the fare as well as keeping an eye out for our stop because I can’t see well enough. I have to ride the short bus now. Don’t get me wrong, I’m grateful for this service. I just really like my independence and, you know, being able to see, and using this emphasizes just how handicapped I am and what I have had to give up.

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

In another nod to normalcy, I just got a message on OKCupid from a guy who is seven years younger than me who claims to be “long and thick just for [me].” I did specify in my profile that I didn’t want to receive any penis pictures. At least he stuck to the rules and described it instead?? I replied and told him his DNA determined his length and girth, and has nothing to do with me.