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.
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.
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.
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.)
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?
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
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: 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: Where do you work?
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.
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.
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.
This has been a tough seven days. Last week was the 19th anniversary of my father passing away; two days later it would have been his birthday. It also would have been my sister’s birthday; we lost her in July the week after I moved to Minnesota. My father’s brother is losing his battle with stage IV throat cancer. And I got my fifth rejection letter from the Mayo, supposedly the #1 neurology/neurosurgery center in the U.S., saying they don’t think they could come up with a name for my disease or a prognosis or a treatment plan.
Like with most major obstacles, I had myself a good cry, and then I called my family and gave them the update on my denied referral. I waited until I had a conversation with my disability attorney; that did not go well either because he seems to think that there is no way I can win my case if there isn’t a name for my disease. Yet his website repeats over and over that when our cases go to court, we should focus on the symptoms and how our quality of life is affected, not the name of the disease.
I have friends all over the U.S. and in locations around Europe, so it’s sometimes easier for me to get the word out on Facebook. I feel a little silly “liking” everyone’s message of support because it feels like I’m fishing for sympathy. However, it’s also nice to know that some of my friends are outraged on my behalf and willing to write/call/tweet in order to call attention to my plight. A few people have stepped forward to say that they have media contacts, so I’m widening my reach with giving them documentation to pass along to their people. The theory is that if the doctors won’t take me, maybe the news will?? My medical coverage is through medical assistance in Minnesota so I would not have any expenses covered if I went to a different state. However, Johns Hopkins has a “remote second opinion” option (for a minimum of $550) and they will review my case without me having to fly to Maryland. I may end up doing this. However, I do not think it’s very effective because it’s one thing to read about my symptoms, and quite another to actually see my issues in person. I have taken to scaring my friends by moving the fluid around in my brain so that my face stops being paralyzed momentarily – aka my “party trick.”
I’m a very social person by nature and being stuck in bed all day and night is really wearing on me and definitely changing my outlook and attitude. Last Friday night I caved and reopened my OKCupid account after a four-year hiatus. I barely had time to update the city when I started receiving messages – I was fresh meat! Generally speaking I don’t reply to obvious copied and pasted notes who claim they like me (without knowing me), but they just restate what they have written in their profiles. I also don’t like to talk to anyone who can’t write a sentence. I know it’s a huge reach to think that I can find anyone willing to just chat and not go on dates, but I have been up front with everyone who has contacted me to let them know that I can’t go out anytime soon. Dare I say I’m lonely??? It feels so whiny to say that. Yet here I am.
I talked to about three of the 20 guys for more than a few messages – most guys were either put off by my request for no penis pictures or my warning that I can’t actually go out. One was far, far too young for me and located a good hour away, but gets kudos for truly creative questions. One was obviously a social recluse and did not do anything outside of his janitorial job, which is really a bit sad. That one would send me messages saying he was lonely and bored and he wanted to come over. I get a serial killer vibe, though, or he’s just not capable of conversation, which is just as bad. He would kill me with social ineptness. I have asked probing questions and he only answers with “yes,” “no,” “ok” and “oh.” I suggested that he check out Meetup because he would never have to spend another night alone and bored if he didn’t want to, and that way it doesn’t solely fall on my shoulders to entertain him. I have enough going on. The third guy was really, really responsive, funny, age-appropriate and not put off by the fact that my bed is getting a lot of my action. I’m actually hoping to meet that one very soon.
The last time I went on a date through OKCupid, it was with a tall, southern gentleman who was ex-military about four years ago – I’ll call him Mr. Army. Mr. Army met me out at one of my favorite restaurants in the Phoenix area. It started out nice enough, though I could tell immediately that he was used to dominating all conversations. I would describe him as being a perpetual mansplainer. Mr. Army was too old to have served in Iraq this second time around, but he made it clear that he had very strong feelings about being over there. I’m a tree hugger and liberal at heart and his very vocal support of George W. Bush and Cheney made my skin crawl.
Towards the end of the meal I explained to Mr. Army that my friend had moved to the U.S. from Iraq twelve years prior to that to marry a man through an arranged marriage, and that she was currently trying to sponsor her parents, brother and sister and their spouses for asylum because they were still stuck in Iraq. Her brother had even been shot in the leg during a failed kidnapping attempt; people in his community knew he had a sister in the U.S., and the kidnappers were hoping to extort money from her. Mr. Army became outraged and asked me, “How do you know that your friend isn’t part of Saddam Hussein’s family? How can you trust her? She has no right to be here!” I told him it was obvious she did not come from some super secret bloodline; she would not sponsor them and put her name on all of the documents if that were the case. She was not being “kept” by anyone through a super secret account. It was an insane exchange. I am not very good at keeping a poker face either.
As I was walking to my car, Mr. Army stopped me to say he wanted to go out with me again. I declined. Did he not see my face??? I’m not certain what we would have fought about on the next date, but I’m betting it would have been about guns or religion. He who squeezes his eyes shut and yells the loudest wins, right? No thanks. I’d rather have a no pride night and sit on the couch for four hours in my pajamas, sprinkle chocolate chips in a jar of peanut butter and eat it while watching “The Notebook.” If Mr. Army is the alternative to that, I’ll gladly stay home.
One of the hazards about internet dating – and I’ve said it before – is that you can get wrapped up in making your grocery list. Shopping for men! In my 20’s I decided that my ideal mate would be tall with blue eyes, be smart and not have any back hair. The problem with this list is that I left out very important requirements, such as my partner should actually like me (and women in general, no misogyny allowed), pay his own bills, do his own laundry, be willing to help me if I needed it…well, I could go on and on. But after the two live-in boyfriends in Cincinnati, I altered my list a bit.
In my 30’s, I still wanted an educated man with whom I could hold conversations. I also added the need to have a sense of responsibility so that I wouldn’t be stuck with having to take care of everything including bills and hard labor. I mean, when I had to work two jobs to make sure the bills would get paid, or the guys sat on their asses while I hauled heavy stuff or packed for a trip, it was exhausting. I also got incredibly tired of hearing why the boyfriends wouldn’t help clean. Both of them said they didn’t know what to clean, and I had to tell them. I asked them how they thought I figured out what needed to be cleaned? I never got an answer to that question.
So around 2005 I was dating heavily through internet sites. I was very excited to start up a conversation with a guy I’ll name Al. He was a high school history teacher, and he could string complete sentences together and speak in a respectful manner. Al was completely average looking with straight brown hair and blue eyes and a very thin build. I thought he had everything I had been missing previously in other dates and relationships. Al was also very responsible.
Our first date was dinner. The conversation did not flow easily. I tend to be animated when I speak, and he was the complete opposite. I felt a little sorry for his high school students because he did not seem to be an impressive orator. But I thought I was probably being too harsh, and so when he asked me out again, I agreed.
It did not take long for me to reveal to him that I was wearing wigs to cover up my bald head. Al took it well and asked a few questions, but the conversation went much better than I expected, so it was a huge relief. We had more dates at museums and bowling alleys. We did not kiss very much and we never had sex or even got close.
For what ended up being our last outing together, we picked a random music venue at the northern end of Phoenix. Al picked me up and drove us there at exactly five miles per hour under the speed limit the whole way. If you have never been to Phoenix, one important thing to know is that no one who wants to live to see the next day drives under the speed limit – most go 5-10 mph over as a standard. Anyway, that evening’s feature was a singer/songwriter that neither one of us had heard of before, and there were maybe eight people in the audience, but we both really enjoyed the performance. Al even bought the artist’s CD and had it signed.
Afterwards we went back to his house and talked for a while on the couch. Al made his big move and kissed me. I am not a fan of kissing with tongue (especially if my counterpart is a huge producer of saliva and I nearly end up drinking it). Poor Al had no technique whatsoever. It was if a fat worm stuck its head out of a hole and wiggled back and forth a bit. I was startled and consciously fought the urge to do the crab crawl backward. Suddenly, he grabbed my right breast and sort of did a “wax on, wax off” motion. I could not stop myself from making a sort of whimpering sound to match my thoughts, which were along the lines of, “Oh shit, this is very, very bad.”
Al sat back and said, “You know, that is the first time I have heard you respond with passion.” I lost all faith that he would know where any of my important bits were located or what to do with them. I extricated myself and told him I was tired and was heading home.
A few days later I called him and told him that I didn’t think we were a good match. Al was respectful, or stoic, or…gosh, nothing! I am sure he was probably disappointed because he wasn’t getting laid anytime soon, at least not by me, but I couldn’t tell from his voice if he was or not. And that is why I couldn’t carry on. This proves that a list is great as a guideline, but checking items off when they are met does not guarantee a love connection.
I’m in my early 40’s now and I still keep a list. If I would combine all of my previous and present requirements, it would look like this: The person I take on in the next relationship must be tall, have blue eyes, play the guitar and sing, have no back hair, do his own laundry, pay his own bills, give me back and foot rubs, not be a follower of any sports, love the arts, enjoy traveling and have an active passport, be at least a fair cook, be nice to me, be a feminist, not grab my boobs while we’re grocery shopping, take the initiative to clean, love animals but not have any, love kids and maybe or maybe not have any, not steal from me, have a witty sense of humor, chew with his mouth closed, brush and floss every day, be a master of lovemaking skills, and be a good driver.
But since the Keebler elves aren’t exactly making men to my specs, I suppose at this point I’m going to settle for someone being nice to me.