relationships

Me and Ziggy

Posted on by akiwifreund

 

Today may have been the first time that I have listened to “Ziggy Stardust” in its entirety since 1993.

David Bowie and I have a pretty solid history. When I was little, I loved the song “Space Oddity.” I don’t know if it’s because I’ve always felt a little out of place in my world, as if I’m living on a different plane than the general public, or quite possibly that I’m an alien trapped in a human body. Whatever the reason, I would sing that song over and over; I have always used singing as a sort of comfort to myself, like the proverbial blankie or stuffed animal.

When I was in elementary school, MTV was born. Our dad was pirating his cable from a neighbor’s wire and we had access to this fabulous station with music and stories 24/7. I loved the really creative videos that gave me interesting visuals to go along with the musicianship. It was the first time I actually saw David Bowie in motion thanks to his new wave pop tunes “China Girl” and “Let’s Dance.” In fact, the “Let’s Dance” album is the first one our father purchased to play on his brand new contraption, the CD player. If we jumped hard enough we could make the CD skip like a record. Our father’s side of the family was blessed with innate rhythm, so we would often have dance parties in our living room, sometimes including our aunt’s five children.

In high school, I joined one of those CD clubs – you know, buy one full price and get 11 more for 1 cent? I got a best of from Bowie that included all of my favorite songs up to that point. It got heavy play. I was listening to it during my first week on Mackinac Island for my second season after I had just turned 19, when I lived above the busiest bar on the island and we had a lot of people coming and going. That is when a guy knocked on my door, started making out with me and coaxed me out of my knickers and my virginity. “Ziggy Stardust” was the song playing when it all went down – I distinctly remember the guy drunkenly saying that he loved that song. I loved that song. Unfortunately, because I had resolved to just getting my virginity out of the way and not trying to make it a movie-type romance, it was not a good experience. He was very rough. He bruised me deeply, my lips were purple and cut. I had bruises all over my ribs, ass and thighs. He was drunk and he doubted it was my first time. My first sexual partner did not care for me or about me, and I paid the price. Well, me and Ziggy. I stopped playing that song.

When I was 22, I had been living in New Mexico when I flew back to be in a friend’s wedding. It was the last time my father and I saw each other. He had cut my hair (the “Rachael”) and we were chatting about his Bowie box set that he received from a client the week before. We also talked about this new cabin Dad had purchased two months prior, and how Dad intended to fix it up and retire there, but that he didn’t think he would see retirement. I told him frankly that I didn’t think he would live to retirement either. He asked me why I said that, and I told him that I couldn’t envision him as an old man, that everything went black when I tried, like a newly washed chalkboard. Three weeks later I had to fly back to Minnesota because Dad died of a heart attack – at the cabin he wanted to retire in. He had gone up there for a weekend by himself to work on a few things and maybe do a little duck hunting. From what we could tell, he entered the cabin, set down his pack, laid down on the bed and died. He was discovered by the local sheriff when my step-mom called for a wellness check after Dad didn’t return home at his scheduled time. The Bowie box set is one of the first things my step-mom thought to give me when she was dividing up mementos between us four kids. She knew Dad and I loved our David Bowie.

I believe in a continuation of the soul when we die. Relating to that, I have a question that I suppose will never be answered, but I’ll ask it anyway. When famous people die, and are so universally mourned, does their soul visit every single person every time they are thought of? Souls must be infinite, but is their energy ever depleted by the millions of times they are tugged and pulled by our sadness? Or do they only have a connection to the people they loved in their lives?

I’ll leave you with my favorite Bowie song, which is his collaboration with Queen. I get goosebumps every time I hear it.

Digging for Gold

Posted on by akiwifreund

This morning, when I retrieved my mail while I was waiting for my sister and her husband to arrive, I received a notice from the Social Security Administration regarding my disability appeal. They said:

*You have the ability to stand and walk without assistance. (That’s a blatant lie – I use my cane for everything.)
*You have the ability to use your hands and arms to perform tasks. (Apparently it’s not a requirement for me to see what I’m doing.)
*You are able to get along with other people for short periods of time. (It’s called Minnesota Nice, bitches.)

“We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in the file, we have determined that you can adjust to other work.”

What would be really helpful is if they included a list of employers who had job offers for me and would not require me to be upright at any time. I can’t see well enough to travel to a location outside of my home, and most employers at least want an interview. So their insistence that I work “somewhere” is pretty weak, considering they don’t have an prospects lined up for me. (I don’t want to hear, “That’s how they do it.” I know they’re assholes.)

The next step is for my attorney to file a request for a hearing, which I understand takes 12-15 months to occur. In the meantime I’ll continue to go to doctor visits and try to find someone who can put a name on this disease and tell me what to expect.

This morning I went to the surgeon’s office at the U of MN to have my wound checked. When he put a fair amount of pressure on it, I started yelping, which led him to believe that there is still some pockets of pus hanging out back there.

Rather than going through the process of shooting me up with Lidocaine and slicing down deeper and purging out more junk, the surgeon took the stick end of a swab and used that to dig around in my wound – think of it as a meat tenderizer, he just kinda made hamburger out of my flesh – without any topical numbing whatsoever. I broke out in a sweat and I had tears rolling down my face. I knew I had to lay still but I was also fighting to get away from him and just make the PAIN STOP.

He said he was stepping out for a few minutes to allow the bleeding to die down; about 10 minutes and a good, sobbing cry later, his nurse came in to re-dress the wound. I’m glad I had that time to myself.

 

 

That Girl Is Poison

Posted on by akiwifreund

Recognize this phrase? I have a station set up on my Pandora titled “New Edition,” and since some of the members of the singing group New Edition split off and formed Bel Biv Devoe, the song “Poison” comes up on my play list. Bel Biv Devoe sang about the dangers of getting tangled up with a woman who was bad news; however, it’s not just romantic relationships that suffer when someone is nasty or devious – friends can be poisonous too.

I am eternally grateful to the friends I have made over the years who tolerate my weirdness and bluntness. Without a doubt, I am humbled by the friends who have mopped and sanitized my house when I have returned from the hospital. I am indebted to the people who have shuttled me around to doctor appointments and grocery store runs, and who have replenished my stock of food and supplies. I have tried to be a good friend in return when I have been able to, which admittedly has been very infrequent for the past 5.5 years because I can’t seem to stay well enough to be out of bed for any length of time.

Unfortunately, because I have the reputation of being a good listener and the voice of reason, my bedridden status has trapped me into being something of a therapist for some. One friend helped me get to a doctor’s appointment about five years ago. This woman and I had become friends back in 2006 when I was working a couple of jobs to pay for my second trip to Europe. That one ride of eight miles nearly cost me my sanity.

Because she found out that I was stuck in bed when I called her to help me get to the appointment, I believe she saw it as an opportunity to unload all that was bothering her – after all, I didn’t have anything better to do, right? This friend was going through a nasty divorce. She would call me at all hours nearly every day, crying and asking me what she should do in certain situations. She would never actually take my advice.

Our interactions became more strained. I finally resorted to telling her, “I don’t know what you should do” every time she called with a new crisis. She switched to texting me instead of calling me. I’m not sure if she thought my answer would somehow be different. Just for the record, it wasn’t.

This woman had a good heart, and I did get a ride from her when I needed it most. I just did not think that I was forever obligated to take on the stress of her failing marriage. For that reason, I cut her off completely. Subtlety wasn’t working, and telling her I was exhausted and stressed from fighting to be heard in doctor visits had absolutely no effect. I feel a twinge of sadness when her birthday shows up on my calendar, but I know that if I pick up the phone and wish her a happy birthday, the cycle starts again.

Another woman I became friends with was introduced by a mutual friend. We became acquainted after we spent a holiday together; I brought a movie that she had watched many times in her native country as a young girl, and she translated the film for us as it did not have any subtitles. I’m going to christen her Ms. Lederhosen.

I met Ms. Lederhosen as she was going through a nasty divorce with her second husband. I had suggested we get together for movies or nights out because it seemed like she needed to do things that would distract her from all of the emotionally draining stuff she was going through. Unfortunately, it was all she would talk about. I’m not exaggerating when I say that. I could say something like, “This tomato soup is good.” Ms. Lederhosen would reply by saying, “Oh, R. (her ex) likes soup too. You know, when we were married, he used to make me take care of his daughters, but they were lazy and did not like me. I would tell them to do something and they would go to their dad and he would tell them they didn’t need to do it.” It’s how every conversation would go. Everything tied back to her ex, no matter what I said, no matter what I tried to talk about.

I remember one time we made plans to see a movie. When we picked our seats out and got settled with our beverages and snacks, she started talking about the ex. The lights dimmed and the movie started; Ms. Lederhosen was not letting that stop her. Other patrons in the theater started saying “Shhhh!” loudly, turning towards us. She wouldn’t shut her trap. I told her that we should wait to chat until the movie was done. She kept talking in a loud voice because she had to finish that story. Well, she finally did…and then throughout the movie, she ran a commentary on what was happening on the screen. At that point I made a mental note to never see another movie in the theater with Ms. Lederhosen.

The ex was dragging out the divorce, filing extensions and demanding spousal support. Ms. Lederhosen was constantly calling and texting to rehash what he had done. At one point she asked me to proofread letters and documents for her because they were going to be used in her case. I would always set aside what I was working on and comb through her submissions because I knew how picky judges could be.

Ms. Lederhosen finally decided to pursue her U.S. citizenship. She didn’t have many friends, so she asked me to prepare a letter of good character for her attorney. Again, I set everything aside and whipped together a professional piece to convince the Court that she was a productive member of society.

She didn’t care for her job or boss, so Ms. Lederhosen sent me her resume so I could send it out to my contacts and enter it in my employer’s database. She wanted to respond directly to her ex’s demands through family court but didn’t want to pay her attorney to do it, so I arranged for a friend who was a paralegal in family law to assist her.

Ms. Lederhosen met a man through a woman who facilitated a social group for foreign-language speakers. I had hoped that meeting someone new would calm her down regarding the ex and encourage her to discuss other items of interest, but no. She even told me that her new man was complaining that she was too focused on the ex.

I was able to meet the new boyfriend when Ms. Lederhosen brought him and her little sister over to my house to visit; it was her sister’s first time in the U.S., so I made an effort to speak slowly – her English was good, but there is always a huge adjustment period when anyone is suddenly immersed in a country where the language is not their native tongue. Often Ms. Lederhosen would interrupt to talk about her ex. At one point, her current boyfriend grabbed her face, squeezed her cheeks and said “Stop talking.” She didn’t, of course. Her sister got completely put off and eventually just fell asleep on my couch while the boor hijacked the conversation.

A few months later, I had reached the point of blinding pain with my shunt – I had developed an uncontrollable leak. Ms. Lederhosen had indicated that she was at her boyfriend’s house but that if I needed a ride to the ER, she was more than willing. I took her up on the offer. They didn’t end up keeping me to bring me into surgery as I had hoped, because at that point they wanted to figure out which parts of the shunt I was allergic to, which would take months. They sent me home with big bad painkillers instead.

Facebook can make or break friendships, and in our case, it broke ours. Actually, for me it was the last straw. I had posted a story about a product that was being given to girls in sub-Saharan Africa to allow them to continue safely attending school during the bleeding days of their menstrual cycles. This charity was distributing silicone cups that could be used to collect the fluid for up to 12 hours and then be emptied and washed in private. Well, Ms. Lederhosen did not like that at all.

She hijacked the post by first saying that she would never want to use a product like that and that she was perfectly happy with her birth control pills. I explained that birth control pills were not an option in this region, and that it was a much safer alternative for the girls instead of their normal methods, which included stuffing their bodies with dirty rags, newspapers or mud. Ms. Lederhosen said she asked her boyfriend’s mom, and she agreed that she wouldn’t use a product like that either, and they were stupid for not using birth control pills. I explained that in this region, pills were not readily available or transported easily, and not everyone could or should be on hormones, and that the girls just really wanted to attend school and the cups were a viable option. Then Ms. Lederhosen posted a huge paragraph about how American women are stupid, fat and lazy, and she was able to lose weight by eating organic foods and exercising (which had nothing to do with what was being discussed).

I blocked her on Facebook. It’s no wonder she has few friends! Unfortunately, my phone at the time was not able to block calls or texts, so for two days she sent me all kinds of nasty messages about how she was prettier, smarter, more successful and thinner than me. Ms. Lederhosen told me how I was jealous of her relationship with her boyfriend, and how my college degree was the equivalent of elementary school in her home country. I sent back one message saying I was not interested in competing with her, and her messages just got nastier. She told me how she was a much better friend than me because she drove me to the ER that one time; of course, she conveniently forgot about all of the ways that I tried to help her when she needed it. Finally she stopped and went radio silent.

Two months later I got a card without a return address. I opened it to discover it was a note from Ms. Lederhosen, telling me she missed me as a friend and that we should be friends again. I didn’t have a return address for her and so couldn’t send anything back, and her info had been deleted from my phone long before that. A week later I got a text message from her saying that she didn’t hate me anymore and that we should be friends. I again told her that I did not want to compete with her, and that she said horrible things that made it difficult for me to want to be friends with her. Well, that just set her off again – 16 messages of vile, nasty words.

Around Thanksgiving of 2015, I received another text from her. Ms. Lederhosen said that she missed me and that I probably still had some bad feelings, but she was there for me if I needed her. The response that I didn’t send but really wanted to? No fucking way.

Pain in the Ask

Posted on by akiwifreund

Every time I watch this clip, I giggle. I hope you will too.

 

Today I had a little procedure in the surgical area of the University of Minnesota. Truly, it was little. But since 1/1/2016, I’ve been in a lot of pain because I developed a boil near my tailbone as a result of laying in bed for 8 months straight. Sure, I get up once in a while, but I’m in bed at least 22 hours of every 24 hours.

We thought it was the trucker’s cyst, but luckily it wasn’t – it would have taken a lot more cutting to pop that meatball out. First I met a PA who turned out to be very, very new (I’m thinking it was his first day or first week because he was asking where everything was for supplies). I didn’t joke with him because I realized how new he was and I didn’t want him to lose his place in asking me questions; a memorized script that one can skip around out of order comes with experience, and he obviously wasn’t at that point yet.

The general surgeon came in, and damn, he was cute. He took a look at my ass, and I made a joke about having to show my ass to everyone. Hey, I worked my way through St. Joseph’s Hospital in Phoenix – may as well start on Minneapolis now. He asked me how I felt about them cutting and draining the problem area. Of course I agreed – I told him to exorcise the demon. Everyone stepped out of the room to enter notes in my chart.

The nurse came in with the PA and she and I chatted while they got all of the supplies ready. Then the PA had the task of shooting me up with Lidocaine. His hands were shaking like the dickens. I honestly don’t know if it was because he was making an effort to spread the juice while the needle was inserted, or if he was just scared shitless of shooting up my left cheek. I want to give him the benefit of the doubt; besides, whenever I get Novocaine in my mouth when I’m getting worked on by a dentist, they do this crazy thing where they flap my mouth around while doing the injection – maybe to avoid getting a big old bubble of juice and instead encouraging it to go into the surrounding area? I got about 8 shots.

They left again, and in about 15 minutes they returned to do the cutting. The doctor talked the PA through doing the incisions. When he said, “You’re going to need to go deeper,” I was just at the point of yelling. They had warned me that the acidity of the bacteria that was pooling in this spot would make the Lidocaine less effective, and they were right. The nurse told me I could swear. I told her that my inner truck driver was coming out and I was getting ready to recite every nasty term I could think of.

They packed the area and then covered it with a large patch. The doctor asked me where I lived and then told me it would be a good idea to return to his office every day and his nurse could repack the wound, at least for the next week. At some point they may even try to get me to pack it myself, but it’s in a spot I can’t exactly see, so that will be a challenge.

In the end, they only got about 5 ccs of fluid out. What??? That tiny bit of junk made me feel as if an ostrich egg had been laid under my skin.

This is going to be a problem for date #3 with Nashville. We were supposed to get together Monday for a day date after he finished his overnight shift, but instead, I have to get my ass packed. By Monday it will have been three weeks since we last saw each other and I don’t want to delay another week, but I don’t think I have a choice. Plus there’s going to be no monkey business while I’m dealing with this wound. I can’t get laid and it makes me want to kick some ask.

Can You Hear Me Now?

Posted on by akiwifreund

I recorded a 20-minute interview with Daniel (“Danny”) Levine about this blog and this crazy life. I’ve only been here for six months and already the Minnesota accent is creeping back in. There were a couple of times where the sound dropped, but you get the general idea.

The Unbearable Lightness of Saying No

Posted on by akiwifreund

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.

 

Face Forward

Posted on by akiwifreund

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

Posted on by akiwifreund

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

Posted on by akiwifreund

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

Posted on by akiwifreund

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.