The Unbearable Lightness of Saying No

I wish that saying “no” to suitors was taken seriously.

I feel like I should rename the Quiz Master to Mr. Up Your Ass. (https://thesickandthedating.com/2015/10/29/whats-going-on-with-your-face/) Like clockwork, he has contacted me on all of the major holidays; I fully expect a message wishing me a happy new year even though I had to resort to telling him to knock it off when he persisted.

I don’t like resorting to being blunt or nasty, but even more than that, I hate being cornered, forced, coerced or manipulated into agreeing to something that I truly have no desire to take part in.

Many years ago, a co-worker and I were having a casual conversation about dating and attraction. He said that when it came to women, even if they were shaking their tail feathers at him, he really had to be hit over the head with a mallet for a woman to get the message through to him that she was interested in him. After being told in no uncertain terms that she desired him, it was his green light to go.

It is his voice that I hear when I say “no.” Because he said he had to be hit over the head to get the message, I no longer hesitate to pull that out of my stash of tools.

I signed up for the site datemyschool.com a year and a half ago in Phoenix while I was still getting surgeries and there was a better possibility that I could eventually resume normal activities. I had a conversation going with a guy down in Tuscon for about a month, but I got the overwhelming feeling that he would try to go back to his ex and reconcile. His profile disappeared and since it was abrupt, I’m pretty sure I called it right. I didn’t have any communications with anyone else.

A year ago I received this huge message that was obviously copied and pasted. It started with, “Hello Sweetie!!!!!….how are you today?….i just want you to know that I am soo intrest in you…” and so forth. After about the fourth sentence I stopped reading. He was going on and on and on and on about himself. There was nothing in there to indicate that he actually read about me and wanted to discuss whatever it was he thought would make us a good match.

Yesterday I received the EXACT SAME message from this guy. This is a clear red flag to me that he’s not going to be easy to communicate with because he is obsessed with telling women all about himself, and does not seem to care that he is copying and pasting and sending the message to the same people repeatedly. He also didn’t want an actual back-and-forth conversation.

Yesterday I was also interviewed for a rare disease podcast. My interviewer, Danny, asked me if I ever used my disease as an excuse not to date anyone. At the time, my answer was no. Today my answer is yes.

Here is our exchange. I was trying to be nice, to subtly send dude on his way.

Me:  Hi. I appreciate your enthusiasm, but I am currently going through a health crisis and so cannot travel. I wish you luck in your quest.

Him:  hello thanks for your msg .. hope you are doing good .. well i dont have any problem .. i can travel to meet you . but i 1st want to get to know you well .. so plz let me know how you feel ok ?

Okay, so he missed the message about the fact that I’m going through some major health issues. I decided to try another tactic.

Me: Thanks for your well wishes. I don’t feel well enough to carry on a long-distance relationship. Right now I have to concentrate on doctor appointments and rest.

Him: hello hope you are doing good there ?.. yes Oregon, Roseburg is where i live now… but i enjoy travel to anywhere, so I am willing to relocate so you don’t have to worry about the distance at all… but for now i just want to get to know you well i think that’s the best start…

Nope. Ignored my reply about not wanting to carry on a long-distance relationship. Well, that and he keeps asking me if I am doing good. Um, no, Bubba Gump, there is nothing in my replies that everything is just peachy. So….

Me: I’m telling you in the nicest way possible “no.” No means no. You are putting more stress on me by ignoring what I am saying, and when I get stressed, I feel even worse. Stop now. [My blood pressure is up at this point.]

Him: ok im sorry .. thanks

In his big, long monologue that he sent to me twice, he had some line in there saying, “I am not the jealous type but I do believe in being honest and you have to earn the trust of others. I have been burned in the past so my heart is fragile, so handle with care.”

I don’t see anything in his actions that indicate he is fragile. On the contrary, he completely bulldozes my replies and continues on his merry way. This DOES ring of the jealous type too – he feels entitled (to whatever is in his circle, be it a woman or whatever), and that immediately eliminates trust. He wants attention, he wants it now, he wants it on his terms.

What happens when men don’t accept “no” as an answer? Guys like this one thrive in our community, ordered by a court to keep a distance of 10 blocks away from his target at all times and pay her restitution of $9,000. He also got a restraining order placed on him for 5 years. Seriously, what does a restraining order and parole do? They certainly don’t stop him from killing her, if he decides that’s a solution for being spurned. I don’t see anything indicating he’s been ordered to take meds or go to counseling, but he’s obviously unstable. So basically he’s been told that this behavior is not very nice, and he’s been sent on his way with a pat on his head. Now he’s sitting at home and obsessing over how he’s going to try to get around the restraining order – I mean, if she receives a severed goat’s head with no return address, she won’t really know it’s from him, right?

http://www.startribune.com/the-stalker-of-the-current-s-mary-lucia-receives-probation-and-five-year-restraining-order/363852911/

Let’s change our dialogue. Let’s stop saying that women must have done something or worn something to invite violence against them. It is not criminal just to be a woman. It’s not criminal to turn down the advances of a man.

 

Advertisements

Face Forward

I have been listening to Pandora and catching up on correspondence, and this song by Hinder came on:

 

Lemme interrupt and say that the advertisement that ran for me immediately preceding this song was for cat food. If we think about placement algorithms, I personally would draw the conclusion that the advertisers assumed that the people most interested in this song/video would be single spinsters with 20 cats for company.

Here’s my beef with this song: The singer is talking about how he wants to fuck around with his ex. He wishes his current girlfriend was actually the ex he is talking to. His “girl is in the next room.” Some of my acquaintances have never paid attention to the entire song, just hearing the chorus, which goes:

“It’s really good to hear your voice saying my name, it sound so sweet
Coming from the lips of an angel
Hearing those  words, it makes me weak”

Sounds hot, right? I mean, who wouldn’t want to know you’re turning someone on just because you’re speaking to them?

Here’s a quote for you:

“Stop looking for happiness in the same place you lost it.”

I always told all of my friends to never go back. There was a reason for breaking up, and the reason didn’t change. In my 30’s, I did exactly what I was preaching not to do – I went back. I went back to Drummer #2 and ended up having to call the cops on him. I went back to Dumb and Angry and ended up having to call the cops on HIM too. I went back to Ping Pong, many times, and nothing ever changed. I am fully aware that a lot of the problem rests on my feelings of being unattractive and inadequate. My inner voice tells me that if they wanted me, then I must settle, because that’s as good as it gets. I am only worth men who control me, or threaten to kill me, or tell me they never want me to meet their parents or children, and I should just be happy that they want to stick their penises in me.

Of course this isn’t true, but that inner voice can be louder than anything else.

The other topic addressed in this song is cheating. Cheating takes a lot of effort. You have to keep track of your lies. You have to make sure you don’t see someone who knows your official significant other while you are out messing around. You have to constantly worry about being caught.

I went to a concert in Phoenix at the Musical Instrument Museum, and by pure chance, I caught someone cheating. I had been at his house a week or two prior to this concert and I met his very cute, very friendly girlfriend. He did not bring that girlfriend with him to this concert. Instead, he concerned himself with sneaking around ME, trying not to hold his date’s hand while I was turned in his direction. I played dumb. He made out with the other woman in a corner that they thought was hidden from my eyes. I saw everything.

Since I had only met him once, I didn’t feel like I knew enough about him and his personal life to call him out on his obvious side dish.

This song really gets under my skin and makes me see red. I want the singer to stop whining about what he has and wishing for something/someone else. Instead, just commit to something, whether it’s to respect and love his current girl fully, or to go back to his ex and and respect and love her fully. I see this all of the time, the indecision, the whining, the keeping the options open in case someone better comes along.

Here’s a better anthem:

A Prayer Before Dating

Today, a good friend posted a surprising quote from her Christmas Eve church service: “Lord, touch us where we need to be touched.”

Amen to that!!! I mean, that’s almost exactly, word-for-word, the prayer I say before each date. Well, okay, mine is a little more elaborate: “Lord, please let him have clean teeth, pleasant breath, an unsloppy kiss, magic hands, a great personality and recently bathed bits.”

This holiday is a bit rough. First, I’m no longer in Arizona and gathering with friends to feed ourselves silly and play games like Cards Against Humanity. They are all my “other” family. I have hosted as few as one and as many as ten friends at my house, depending on if they had already been extended an invitation or they had family in the area. I have always made sure they had presents under the tree. I try not to think about this or any aspect of my former life, because it inevitably causes tears.

There is also a gap with our sister passing in July. Her absence also brings tears. This is the first time in about 23 years that I, my other sister and our half-brother are in the same city around Christmastime, and it would have been perfect to have our oldest sister here too. We are still scattering a bit – our brother is heading back to Wisconsin to be with his girlfriend and her family for the holiday. I wonder if we will all ever be in sync; none of us has experience in how to act like siblings as adults living in the same area, and I watch friends who have mastered this skill with envy.

And of course, there is no soul mate under the tree. Santa baby, what the hell???? It’s too soon for me to be able to tell if the person I recently met is a match; we have a few strikes, including my inability to drive, our distance (50 minutes on a good day) and his recent purchase of a puppy (since I’m deathly allergic). He has a good heart, though. Right now we are enjoying each others’ company.

This is a difficult holiday for a lot of my friends who are struggling with illness, loneliness, isolation or job loss. I don’t have any words of wisdom to pass along. All we can do is get through the next week. Maybe what we have wished for this Christmas – a job paying a living wage, gatherings with friends, a loving partner – will show up, but just a little late.

Below is a picture from my house in Phoenix when I had two living rooms and decorated two Christmas trees. Again, tears. God, I loved that house and the life I made in Phoenix. But happy holidays to you, wherever you may be.

2ChristmasTrees

Initiation to Rare Disease – Not My Own

Back in 2005, I worked in the tech department of a very large mortgage company whose CEO was the tannest, slimiest, shiftiest man I’ve ever seen. The tech department was overrun with men, so naturally, the few of us women tried to bond as best we could. One such woman, whom I will call Blondie, was a trip. She was born and raised in an Eastern bloc country and knew how to speak her native tongue and Russian first, so English was a third language.

In meetings, of course, we were outnumbered greatly by the guys. I remember our group being called in to discuss something. Blondie said, “Well, let me stick my chest out and say this.” Of course, she meant that tricky little saying, “Let me get this off my chest.” There were a few snickers around the room, so I leaned over to her and said, “Blondie, you mean, ‘Let me get this off my chest.” She nodded and practiced saying it a few times. When she spoke up again, she said, “Let me just take off my shirt and say this.” There was no hope of recovering after that one, the whole room lost it.

Blondie was a great person to socialize with. She was unafraid to talk to anyone, whereas despite my theater training, sometimes I hang back (but I think it’s mostly my desire not to be seen as a bore or a weirdo). It was because of her that I went to a swing dancing event and met a woman who introduced me to her good friend whom I dated for four months.

It was a big event with a 20-piece orchestra and every seat in the ballroom was filled. We were seated at a large round table with about twelve other guests, and it wasn’t long before we were all spinning around the dance floor. Blondie started talking to K. first when we were resting between songs, but then K. and I started talking. I revealed I was single and having a hard time with dating because I had to wear wigs to “pass” in public. K. excitedly told me that she had the perfect guy for me, someone who had been her good friend since childhood.

Never one to pass up an opportunity, I told her I was game. She warned me that her friend had a pronounced limp because he had a rare disease – neurofibromatosis, or NF – and he had many surgeries and successfully beat cancer. I didn’t mind at all. I was more worried about finding someone who was compatible emotionally than whether he could chase me across a field.

The Gambler and I started trading emails, and then chatted on the phone. He decided he didn’t want to waste any time meeting me, so he talked me into bringing my friends who were visiting from England up to the interactive zoo in the extreme northwest of Phoenix. This was also in July in the dead heat of summer. So picture this: my cold-weather friends are tagging along with me in 115 degree (F) heat to maybe pet a giraffe and meet this stranger.

The Gambler was very friendly and used to talking to people he didn’t know well. As it turns out, he was the NFF (Neurofibromatosis Foundation) ambassador for the region, and had traveled a few times over to Europe as well. So my friends thought he was friendly and seemed a decent sort.

The Gambler and I had our first relationship test very early, at about the two-week mark. Neurofibromatosis causes tumors to grow on the ends of nerves, so he had had many, many surgeries at that point to cut the tumors off of the nerves. The tumors can be benign or cancerous. This round of surgery, however, resulted in about 15 benign tumors being removed in both forearms.

I was in the waiting room during the surgery. I helped him get dressed and also with wrapping up his surgical sites so he could bathe. I scrubbed his back. We hadn’t even been intimate at that point, but as a nurse, you are not supposed to be checking out someone’s junk, so I did my best to avert my eyes.

Because I immediately started spending a lot of time with him, there were things I learned that may have not come up for a few months in a relationship that progresses a lot slower. The first is that he was hooked on gambling. This was back in the day when you could play online poker and bet real money. It was how he brought in extra income to supplement his disability pay. The second is that he was a sports whore. He actually rigged 4 TVs and 2 computers so he could simultaneously watch multiple games – basketball was his favorite. The third is that The Gambler’s family was very, very dysfunctional. His father was this giant of a man who drank all day and all night and beat his mother. They lived in a subdivision for retirees and owned a golf cart, and his dad would get fall-down drunk, take the family dog and go for a ride. He had already killed two family dogs on separate occasions from turning the cart over. His mother always tried to not make her husband mad. They kept getting more dogs.

Obviously this family dynamic greatly flavored how The Gambler interacted with me. He would fight to the death to get his way, whether it was where to eat or how to spend our free time. He would bully me first, then he would bargain. The Gambler would tell me that I had to do what he wanted to do because he had NF; if that didn’t work, he would tell me he would make it up to me later. All of our timelines revolved around sports schedules and online poker tournaments.

I learned a lot about the NFF and about rare disease in general. Networking with other people, grant writing and summer camps were all foreign concepts to me, but after driving him to a few locations, I started connecting with the value. The Gambler’s cause became my cause, at least in becoming more aware of the disease and the many manifestations. I know of two celebrities who (probably) have it and that’s the first thing that pops into mind when I see them – then I spend most of a movie looking for the signs, now that I know how to spot them.

The Gambler begged me to go shopping with him for clothes in anticipation for his next European trip for the NFF. He had been wearing size XXL, but really, his body was more like M. I talked him into a compromise so that his pants and jumpers weren’t dragging on the ground.

When he returned he told me that all of his friends made fun of him because his clothes fit, so what I made him buy was embarrassing and he was never going to take my advice again.

I didn’t feel like I was in a loving relationship at all. I called The Gambler to end it, and of course he tried to bully me into staying with him, then tried bargaining. He told me we could break up but that we should still go on our Las Vegas trip that we had planned. I kept telling him that I wasn’t interested in acting like a couple if we were no longer together. Finally I set a date and time for us to meet so I could get my belongings back (I had lent him an air mattress for a guest, plus various other items like sheets and towels). The Gambler rescheduled the meetup at the last minute a total of four times. Each time I had driven in rush hour traffic an hour each way. The fifth time he didn’t call and didn’t show, so I sent him an email saying he could keep everything because it wasn’t worth me chasing all over the city. Oh, but he tried to get me to come back to him, calling me constantly.

I kept the emails. I keep everything! This was our exchange:

ME: You and I are no longer dating.  This means that we won’t be going to Vegas together.  My decision to not be in a relationship with you is NOT your queue to follow in your parents’ footsteps and alternately bargain with and bully me into changing my mind.  The fact that you are not accepting of my reasons and choose to completely ignore them prompts me to follow my instincts and say that we should NOT meet up.

HIM:  you are sooooooooooooooo wrong about everything

what do my parents have to do with this anyway. you should not even mention them

bullying you into being with me  oh come on. you just missed out on the greatest guy in the world. you will regret this. i already regret opening up to you and sharing things about myself that only very few have ever known and will know for that matter. as from a famous movie wasting hugs and kisses on you too, when in the end it ment nothing to you. you have only just begun to see an ounce of me. as for your safety lol come on there is not a mean bone in my body. you hurt yourself more by not being with me. i am not like your other boy friends and i am a lot smarter and mean when it would come down to things like that. but truth of the matter is by doing something to you or your prized stuff would just bring me down to your level, and that surely is a place i don’t want to be. i rather have cancer again rather than be down there!
when i get home we should have dinner and at least be friends. we have tickets to use anyhow. i thought you should know to i have already taken 5 lessons in dancing to surprise you (even before marcos) k. just slipped up the surprise, and i like it so i am sure we are going to running into each other anyway at whatever dance events that i might like to go to.

i am not going to hurt you or your stuff. again like i said it would just bring me down to your level and that’s a place i don’t want to be because from all this and looking back on it i can tell already that’s a place i don’t want to be. but when we were together i would have gone there for you in heart beat. i am sure the person your with now would appreciate being told now if you are going to hurt them in the end. i also can assure they wont be half of what i am.

i hope in the future when,who,what (ever) you decide to be with, you don’t hurt them as much as me because it will come back to you i will assure  you. if i do see you with some one i will pray that you don’t hurt them. then again maybe it will be your turn whether or not they want to be with you.

hope ur new job is going well and hope all is well for you
hope your health is fine too

best wishes and will talk to you soon

ME: Read your words.  Maybe it will take a few years for what I am trying to explain to you to sink in, but I’m going to try one more time.

I mention your parents because your dad drinks, beats your mom, begs her to come back and says he will quit drinking/beating her, etc., and she takes him back.

If you go back and read your words to me, you tell me that you hope that I get hurt, that I’m the lowest of the low and you would rather have cancer again than to be on the same level as me.  THAT’S THE BULLYING PART.   Then immediately after that you say let’s be friends, and no one is going to treat me as well as you do, and you would have done anything for me.  THAT’S THE BARGAINING PART.  You’ve watched this cycle with your parents happen over and over and somehow you have come to the conclusion that this is acceptable behavior. I, on the other hand, do not allow my friends to say horrible things to me and then try to win me back.

And what have I done to be the scum of the earth? I’ve acknowledged that I honestly couldn’t live with our differences and decided to end the relationship. I didn’t stay to hope that things would change.  I didn’t stay to make your life and mine miserable by fighting with you or resenting you for things that I ultimately couldn’t tolerate.  Instead of sitting back and saying “I don’t understand, but I respect your feelings”, you have discounted everything I’ve tried to say and have said some very nasty things besides.

I’m tired of fighting to be heard, which I’ve had to do throughout our time together.  I still believe you have a bright future and I wish you a happy life, but I will not be a part of it.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Three years later, he sent me a friend request on Facebook (I declined).

I snooped around and discovered that he was engaged to a psychology student. I figured either she wanted a project or she was fucked up herself.

In 2012, The Gambler succumbed to cancer. I have no idea if he married that young woman.

The moral of the story? We are, after all, humans first, and NOT just our diseases. I don’t have to stay with someone who doesn’t treat me well, and neither do you. And just because a person has a disease does not mean that he or she cannot do the work to learn to be a better person and break some bad familial cycles.

 

 

 

Hope for the Hopeless

I had a date yesterday.

We met on OKCupid. He complained that women weren’t responding to his attempts to start conversations. I complained that men were opening with sexual demands. I’ll call him Nashville, since he is from Tennessee and still has quite a pronounced twang to his speech (which I think is adorable).

First we were chatting through messages on OKCupid. Then we graduated to texting on our phones. Though I haven’t asked him, he must have wondered if I was being flaky because I didn’t start texting right away, but I was worn out from a couple of doctor appointments. Then we graduated to actually talking on the phone; the first time we talked we were on for 3.5 hours, then we got on later in the evening and chatted for another 3.5 hours. Then we made a date.

It was just supposed to be a lunch date, and really just a coffee date, no food involved. I picked a spot two blocks from my apartment. We walked from my place, and luckily I didn’t end up getting the droopy face by the time we got back to my flat. Nashville asked if I had any plans for the remainder of the day, and if not, would I like to do dinner as well? I was totally game since we seemed to be getting on so well. We got comfortable in my little shoe box flat – he on the couch and I laying flat on my bed – and we spent the afternoon watching music videos from the ’80’s. Wham!, David Bowie, Scorpions, Psychedelic Furs and Def Leppard all got heavy play.

Nashville and I bundled back up and walked two blocks to a pizza place where we had the most flavorful pie we agreed we’ve had in a long time. Then we went back to my little flat and made out for about an hour. Nashville and I had a very frank conversation about how neither one of us wanted to immediately jump into having sex because we both had a history of picking partners who were a poor match for our values and lifestyles. He also asked if he could see me with my wig off, but immediately my sphincter tightened up and I asked if we could wait for a later date (it’s like being doused with cold water from what I understand, seeing me like that). I wanted to hang onto some of the attraction in case Nashville decided he couldn’t handle my baldness after all because I don’t want every dating experience to be colored by my need for wigs.

When it was time for him to leave, Nashville and I discussed his work schedule and agreed that we both wanted to see the other person again as soon as we could figure out a time, which will be next week.

I’m realistic about my challenges. He is getting a puppy on December 27th – something he already planned and paid for – but he knows I’m deathly allergic. Nashville also voiced concern about having to commute to my place and the fact that I’m not able to share in the burden of driving back and forth. He lives about 50 minutes north of me. Driving that in winter weather will probably stretch that to more like 90 minutes. But we also have some things going for us, including our age and desire to have a mutually respectful relationship, and neither of us has children. Nashville also doesn’t mind that I swear like a truck driver and it seems he has been raised right – he sees women as his equal, not princesses on pedestals and not second-class citizens either.

We traded texts this morning. Nashville said, “I really like you.” I wrote back, “I really like you too.” I meant it, too. I said it without hesitation and reservation.

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.

To Date or Not To Date, That Is the Question

I hear this sentiment often from fellow “spoonies”: They have given up on dating. They enjoy my stories (thanks, I try!), but they are not putting themselves out there in the dating pool. And why should they? It’s tough. You’re naked and vulnerable and your waves of pain crash into your body so that you can barely stay afloat. You get tired sometimes – exhausted, really – of paddling just to keep your head above water.

But to borrow from Mindy Kaling’s new book Why Not Me?, all I can say is, why not me?

This song from Andrew McMahon reminds me of my teenage years. I didn’t actually go on my first date until a week before I graduated high school, when I was already 18. I was a late bloomer. But I felt free, and I couldn’t wait to live my life and choose my own adventure.

When I finally did get into dating, it was just how I imagined it would be. And by “it,” I really mean the men. The kissing, the making out, the talking about nothing and everything, felt just like I thought it would. I felt passion and I felt heartbreak. I felt excitement. Sometimes I felt like I was on fire.

It has been a very long time – possibly a decade, if I think about it – since I have had a love who freely returned love to me and wasn’t afraid to say it. Though this rare disease has eaten away all of my supposed “good years,” when I am finally relaxed and confident in my own body, I’m not ready to give up. I still think I can have the same feelings I did at 18, even if I can no longer stay out till the wee hours of the morning with groups of people I’ve just met, and then crash on a random couch or floor or bed and trade secrets with a man who is enchanted with my eyes and just wants to hold me and see a little of my soul.

So, man whom I don’t know yet, I’ll meet you at the high dive. Take the leap with me. I promise that I’m worth it.

 

Caught Between a Rock and a Short Bus

The problem with losing every hair on your body, or very nearly (because my big toes are always the last to shed), is that you have to find a way to define your facial features but still blend in with the rest of civilization. My eyebrow tattoos were last touched up almost two years ago and were fading and turning a pinkish hue of tan, prompting me to color over them with a combination of pencil and powder. This is not a durable solution, though. I still have really oily skin like a teenager and usually within an hour, if I go to push my wig bangs out of my eyes, I end up schmearing my eyebrows in the process, so I look like a crazed devil.

It took me a while to find a permanent makeup artist in the St. Paul/Minneapolis area – first because there don’t seem to be many at all, which I blame on everyone being a tree hugger and shouting from the rooftops how “natural” they are; second, because I don’t want to get just anyone to ink my face. I finally found someone who seemed to use the methods that I was familiar with to give me the most natural-looking brows possible, who also has a decade of experience under her belt.

The ride out there via Metro Mobility (http://www.metrotransit.org/metro-mobility if you’re curious) was pretty uneventful despite the dispatch center’s computers being down – everyone just made do. My driver was on time and there was only one other lady on the bus. The ride back, however, was a little more interesting.

The woman who was our driver for the trip back was very, very nice and good-natured. Unfortunately, I realized that she was used to a certain clientele because she was talking to me as if I was deaf instead of mostly blind. She was shouting, actually, and using small words. I was only the second rider on and she had to pick up four more people before she could start dropping us off. For most of the ride I was the only female on the bus. My trip lasted almost two hours.

By the time it was my turn to get dropped off, I was mostly blind. The last passenger we picked up was an elderly lady who seemed pleasant enough when she boarded, but when the driver went to escort her to her seat and strap her in, the woman refused to sit down. I could immediately feel the tension ripple through all of us. We had been on for quite a while, someone in the group wasn’t really big on bathing and we were in that odd space of being too hot or too cold on a winter day trapped in our layers of clothes and dependent upon the driver to run the bus’s heater. We were all individually and collectively ready to pounce on the woman if she didn’t cooperate. Luckily we didn’t have to, the driver distracted her by saying she was carrying a lovely bag; the woman was still confused by the seat belt the driver was hooking up for her (“What in the world are you doing??”). So when the driver was required to escort me to my front door, she just kinda did an “Okayareyougood?Ineedtogoincaseshedecidestoescape.”

I discovered that while I was out getting my eyebrows put back on my face that the financial coordinator from Johns Hopkins had called to tell me that medical assistance didn’t have any record of my request to be seen at JH. Since I had had four separate conversations with the company in charge of my Medicaid and they had actually called the PCP who was supposed to submit the request, I knew that was not correct. I spent another hour on the phone trying to find out who had ignored the notes and faxes on my file that I had sent in myself; I had to leave another message for the financial coordinator to ask her to try again. I really don’t want to piss her off because she is the first person I’ll deal with at Johns Hopkins, so what she does or doesn’t do is going to greatly influence my time there.

The eyebrows, the special request for medical assistance, the stuff that fills my days now instead of a job and trying to plan my next social event, is not anything that normal people can relate to. How can I explain it? I can’t even summarize it all in a sentence or two.

I also had messages waiting for me from two men – one from OKCupid, and one from Match. They are actually both ten years younger than me and seem to be very physically active. I’ve traded messages with them before so I have a somewhat superficial handle on their personalities. I instantly developed anxiety when I saw their messages. One made it very clear to me that he is a fair weather friend; I told him that I thought he would be a fun person to know, but he would become bored with me because I can’t go out and do things like he does. He responded by saying that I should contact him when I’m “better.” Well, there were only about two weeks between his last message and today’s, so this just proves to me that he thinks I’ve got the equivalent of a cold. The other one suggested meeting up in our last exchange. I told him that it had to be in my neighborhood and within walking distance for me, and then he didn’t respond for a little over a week. Today he indicated I should call/text so we can meet up. Does that mean he’s okay with my circumstances, or that he’s hoping that it’s not as bad as I am saying? I’m trying not to let my self-doubt rule, but now I’m fighting the urge to crawl under my blankets and overdose on emo music.

How do I explain having to use the short bus? And dammit, now I have to wait another week to even try to go on a fly-by date with the second guy because my tattoos need time to heal. Right now they look like two greasy, dark, flat caterpillars have been smashed on my forehead because I have to keep them moist with ointment. If I keep throwing these obstacles at him, am I driving away a good date?

Tonight’s music selection reminds me of Heath Ledger every time I hear it (a la 10 “Things I Hate About You”). It makes me sad because I remember thinking that when I saw him in it, I was convinced he was very quickly going to become a star and would be easily recognized – and he did.

 

It’s That Time Again

I’m not talking about Daylight Savings Time (I really think that should be done away with). I’m not talking about burning a yule log and sipping a hot toddy. I’m talking about putting on the most ridiculous paper “gown” and having my girl parts checked.

Five years ago this month I made the best decision I ever could have made and that was to push for a hysterectomy. I had had many, many problems since the age of 19, including some fast-growing fibroids that had taken over my uterus and prompted a quickie biopsy (without any anesthesia or numbing). I remember the doctor coaching me through the pain of that biopsy and at one point saying, “You’re doing good, we’re halfway done.” And like Satan’s wife, a deep, hideous voice came out of my mouth that said, “Only HALFWAY??” By the end of 2010, if I was lucky I had a whole week off every month from bleeding, rather than the reverse being true. So at age 36, I kissed my uterus goodbye – or rather, I gave it a good shove and told it to kiss my ass.

Thank goodness I don’t have to worry about birth control or how to control a flow. But I still worry about diseases, so I requested a full workup from my doctor – peeing in a cup, scraping the “pouch” that was left behind where the cervix used to be, and a couple of vials of blood took care of all of the testing. The person I saw today was new to me, so it was kind of odd that I had to convince her to check me for everything, as if she was thinking I was too old, too disabled or too nice to have had multiple partners – or all of the above. What I didn’t say was, “Yes, I’m still sexually active even though I look like Quasimodo right now. You’d be surprised what guys will overlook with the promise of getting a piece of ass.” A couple of times she paused as if she was waiting for a number. I finally said, “Look, I’ve never been married, and I’ve been single a lot, so yeah, test for everything.” I don’t like to leave anything to chance.

Then we had a conversation about the hair “down there.” She wants all ladies to go back to the ’80’s, when porn didn’t dictate the majority of women under a certain age shaving. She was singing the praises of how the hair kept pollutants out when women weren’t punishing themselves for being adults rather than little girls. I reminded her that I really didn’t grow hair ANYWHERE, and she said that she didn’t want me to get rid of anything – that I should try to keep whatever I could get. I snicker now because the next logical progression if I made that choice would be explaining crop circles in my kitty hair when I’m naked with my next partner. Alopecia makes hair fall out in perfectly round circles; when you have universalis, most or all of the circles have melded into one universal loss of hair everywhere, but I sometimes have some patches. If you have ever thought to yourself, “That dude should just give up trying to grow a beard because it ain’t happening,” that would apply to my situation too.

Today I remembered a doctor’s visit a few months ago when I was waiting in line to check out. There was a kid in his early 20’s who didn’t have much experience with going to the doctor or the intricacies of dealing with insurance. He was bounced back and forth between the front desk and the back one because he really just wanted an appointment for STD testing, but it wasn’t included in his “free” yearly exam as he had hoped; he finally left the office without getting anything done. I could tell he was worried about paying his co-pay and co-insurance. I wanted to step up and offer to pay for it, but I would have violated what little privacy he tried to keep – I didn’t want him to know I heard everything, but I also didn’t want him to walk away without getting tested. In the end I had to let him go. I sure hope he was able to take care of it sooner rather than later.

Today is World AIDS Day. The prognosis has changed greatly since the early ’80s thanks to advancements in medicine, but I’m more than happy to get tested regularly so I don’t end up being part of that demographic. I’ve got enough going on as is.

Good Thing I Had Chocolate Handy

Today was pretty rotten. I feel like I am writing the same thing over and over again too – that yet another doctor thinks I’m more trouble than I’m worth. This time it was my PCP (primary care physician, for those of you lucky enough to only need one every five years). We had traded emails at the beginning of this month about what I needed at the next appointment – today – so I came prepared with my list and a sizable stack of records in case they were needed.

We quickly covered maintenance meds and labs. After that, I asked her first if she would be able to send a quick note to the company managing my medical assistance to see if the state would consider negotiating prices directly with Johns Hopkins so I could be seen there. Immediately she got pissy and told me that she doesn’t write letters for anything, then asked me repeatedly what I hoped to accomplish with a letter. I explained again that the state would consider my case (since I’ve already been turned down by a dozen doctors at all of the big institutions as well as various offices in MN), and that the financial adviser from Johns Hopkins indicated that other people from states other than Maryland have had success under the same circumstances. She then asked me what I meant by “turned down;” when I told her that the Mayo wouldn’t even see me, she snapped at me that she knew that, but what did I hope to accomplish? Jesus H., I was really having a hard time dealing with her nastiness.

Then I brought up submitting my case to the NIH, and she said no way, get one of your specialists to do it. I said, “Get one of the specialists who refused to take me as a patient and told me not to come back?” Then she said she couldn’t do it because there was no way they were going to accept the recommendation of a PCP. I pointed out to her in the directions that they wanted the submission to come from the PCP. Then she said she didn’t know me well enough, to which I replied that she could ask me anything, and I brought records to back me up. She told me there was no way she was going to read my records. I gave her a summary I wrote, and she proceeded to mock everything I noted – quoting what I entered and then said, “What is this??? You can’t write this!” when I said things like, “The neurosurgeon opened up my abdomen and noticed it was red and swollen, probably from a reaction to the catheter.” I told her I had a lot of abdominal pain, and she said, “From what???? Do you think your catheter is coming out of your abdomen or something?!” I told her no, but the horrible pain started the very first day the original shunt was placed in 2011 and it has never gotten better, and the neurosurgeon didn’t notice until two years later that he could actually see the physical reaction with his own eyes when he didn’t have a general surgeon assisting him. Finally she said that I needed to make another appointment with her, rewrite everything, and if she liked what she saw, she would sign it. She also said I wasn’t allowed to talk about anything else at the next visit.

Yeah, I get it – doctors have a lot of pressure on them – but she had me in tears. I didn’t understand why she was so shitty about the stuff I asked her for, especially since we traded emails on it.

After I got home and had some chocolate (yes, I ate my feelings), I started the search for my next PCP. I found someone at the U of MN who supposedly likes complex medical cases, so I’m just waiting to get a call back to see if she will add me to her patient roster. As luck would have it, she used to work for the NIH; it would be nice if she stayed friendly with some of those contacts.

At this point, my team of doctors is pretty sparse. I have a GI doc who is going to do a biopsy next week of my esophagus; I have an OB/GYN for my lady parts; I have a dermatologist who is going to track any skin changes since my family has a solid background in melanoma and squamous cell carcinoma; and I have an immunologist who prescribes me Epi-pens and inhalers. The problem is that none of these doctors can actually help with what has been forcing me to stay in bed for these years.

This is just one of those days where it feels really fucking lonely to be me. The Carousel of Crap rides again.