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.
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.
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.
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.
The Quiz Master (previously referred to in “What’s Going On With Your Face?” post) messaged me today and wished me a happy Thanksgiving. It was not his first message to me since he signed off with a “goodbye and good day” after I told him to stop contacting me. Oh, no. I knew he couldn’t be counted on to leave me alone, considering how obsessive he is. The Quiz Master also texted me on November 15th and said, “Hey, how are you?” as if I hadn’t cut him off. As if I would come to my senses and say, “Oh, you’re the best Quiz Master ever, I don’t know what I was thinking in telling you to go away.” He, of course, told me that I was pushing him away just because I am stubborn – not because I actually want him to leave me alone. “No” doesn’t actually mean “no” and all that bullshit, according to him.
I also got a cutesy cartoon from the church guy who went radio silent in “Showing Up is Half the Battle.” This was after he sent me messages saying “happy turkey eve beautiful” yesterday, and before that a message saying his aces were up while playing poker and that he wished I was by his side as he was winning.
Don’t worry, I didn’t reply to either of these jackasses. And in perfect harmony with this post, “A Little Respect” by Erasure played on my Pandora while I was typing.
On a different note, I traded emails with one of my mom’s sisters and updated her on what was happening with my situation. She said she had contacted my cousin, who is a doctor of osteopathy (DO), and he said that the doctors are turning me down not because I’m giving them too much or too little info, but because they can’t “win” with me – there is no way they can diagnose me. As it stands right now, there are approximately 7,000 diseases out there in the world that have no name or etiology, and the majority of them are similar to mine only in that the symptoms are neuorological in nature. I have been in contact with some groups that I think should be able to put me in touch with the proper researchers, and there are rare disease groups that focus on finding resources for patients. However, I’m feeling a bit like I’m drowning again. A lot of these groups talk specifically about patients that are children. I know it’s especially troubling when children are stricken with major illnesses; after all, I was sick for most of my childhood. However, now that I’ve managed to become a middle-aged adult while this particular disease popped up, does that mean that my life is worth less? I had my chance to reach adulthood so am I therefore not worthy of assistance?
Every person I talk to tells me not to give up. I am not sure I can anyway. I mean, I had to give up my house, my car and working – what else am I going to do with my time? But at some point I need doctors and researchers to fill in the blanks. I can’t imagine going another 10 years like this and waiting for technology to catch up.
Today was the first time in about 23 years that my sister, my mom and stepdad and I were actually in the same state for a holiday, so we pigged out at my sister’s place. Yesterday and today were pretty difficult for me and I think it has to do with the temperature, air pressure and humidity; we got snowfall that actually accumulated and stayed today. I had to spend most of the time in bed because of fibromyalgia pain, but also my CSF was accumulating like the snow. I was hoping I’d be able to hang out for a few hours before my brain started being crushed, but instead I began drooping noticeably as soon as my stepdad picked me up, and I had only been upright for about 45 minutes at that point.
Wherever you are in the world, I hope that you can find things to be thankful for every day. I’m working on my list.
Update: This morning, November 23rd, he sent me a text message saying that he was sorry because he fell asleep, and then he went to church and turned off his phone. He offered to show me the logs “where it proved he was in church.” I told him that all he had to do was text or call and tell me it wasn’t going to work out, not wait two days, and that it was time to live an authentic life and stop making excuses. Seriously, I am so done raising men.
Yesterday was a good day for me, health-wise. I had vertigo and fatigue but not a facial droop. I thought I was undeniably lucky – because a friend from the past had offered to pick me up and take me out to karaoke, and rather than having my face paralyze by the time we arrived, there was a good chance that I would be able to be upright for a few hours.
He and I had talked about my limitations and what to expect to happen, which is to plan for the worst and hope for the best. All week he was telling me how excited he was to see me after all of this time. Then he started talking about how it has been a long time (in the neighborhood of 15 months) since he had dated, or been close to someone physically. Because we are so different on the religious front, I warned him that we wouldn’t be a good match because church is such a big portion of his life and I am 1,000% a non-believer.
I texted him Saturday afternoon to find out what time he was picking me up so I could plan accordingly. He told me that he would be by at 6 pm. Then he started texting that he was nervous about his teeth – he knows that I like it when men take care of their choppers. (I didn’t tell him that it’s because I had had boyfriends who had let their teeth rot and it was horrible kissing them.) I told him I knew it was expensive to get them fixed and that I was aware that he was making an effort, I just didn’t want him to have to get dentures in a few years at such a young age. I also told him that I had my own insecurities, but we should both try to work through them and enjoy our time out and catching up.
At 6 pm, he didn’t show – but he sent a text saying it had been a hell of a day and his roommates were fighting. At 7:30 he was still a no-show, so I texted him to ask if he was still on his way over or if we needed to figure out a different day.
Crickets. Nothing. Absolutely nothing, not even this morning.
There weren’t any stabbings or shootings in his area. I know this because I checked. With this in mind, there is no great mystery surrounding why he is still single. He has my cell phone number, my email and for Pete’s sake, my street address. I’m really struggling to find a place in my heart that will allow him the benefit of the doubt if he does come back to me, sniveling about something or other happening that prevented him from telling me what the deal was. It’s the kind of behavior that I would expect from a stranger but not at all what I want in a friend.
And if I sometimes sound bitter or disillusioned through the course of all of these blog posts, it’s because I am. Nearly every man in my life has let me down, with rare some exceptions. But rather than allowing this particular night of waiting needlessly to get my blood pressure up, I’m calm, as if he has never existed in the first place. As the daughter of an alcoholic, disassociation comes easily to me. But men should know that every time they do something like this, they break women’s hearts, even if it’s just a tiny bit; it all adds up.
While writing these few paragraphs, one of my favorite Anberlin songs came up on my streaming music. I’m sad they broke up in 2014 because I’ll never have the chance to see them live, but thank goodness for the permanency of YouTube.
I’ve got two accounts going, one on OKCupid and one on Match. After making one acquaintance and laughing about my crazy exchanges, it really drove home the fact that I am likely expecting too much from one and too little from the other (Match is supposedly where the more serious people go to look for love). So I changed the first line of my OKCupid profile to say, “I’m not looking for a hookup.” I also removed some items and added some more to dumb it down. For instance, my introductory paragraph has bullet points and includes, “I’m a feminist. This includes the concept that no means no” and “I don’t believe in organized religion.” Further down for the section that starts with, “I spend a lot of time thinking about” I finished it with “equality, healthcare, social justice, cats and dogs and why I can’t have them, and how much I want pizza.” Lastly, in the section that begins with, “You should message me if” I entered “- You are a non-smoker (of all things); – You really are single, not looking for a third in your threesome or looking for someone “discreet” so you can cheat on your wife. C’mon, it’s NOT complicated – you just wanna catch you some strange, let’s call it what it is; – We live in the same country. Please, no penis pictures. Seriously.”
So the first message I get after my revisions is from a guy with one photo where he looks like a total mouth breather, 34:
Him: How are you doing today? I would love to talk with you more. You are very beautiful by the way 🙂
Me: Hi, thanks. What would you like to chat about? What style of literature do you normally read?
Him: I read all sorts of books. What are you doing today?
Me: Today is laundry. If you are going to say “Let’s do something,” I have to warn you – I can only be upright for about 30 minutes, tops. We could probably do a high five on the sidewalk. 🙂
Him: Why only upright for 30 min?
Me: Super rare brain disease.
Him: Well we could have fun lying down? Lol
Me: Nope, not looking for a hookup. That was just a line about wanting to chat, huh?
Him: Why no sex
Me: Am I just here on this earth to fulfill every man’s fantasy and whim? No. You want to stick your dick in me without treating me like a fellow human being with value. I’m not interested. After that he blocked me. I am just going to assume it’s because he’s trying to stop himself from making the same stupid mistake again because he won’t remember soliciting me for exactly the same thing I specifically said I didn’t want.
Man, 50, lives 80 miles away:
Him: you want to take me out to lunch your treat
Me: Aerosmith, “Dream On.” It’s my song gift to you. I blocked him. I didn’t have the energy to educate him on how to score.
Man, 39, local:
Him: Wow…..you are absolutely gorgeouz!! I wish I was your type.
Me: Thanks. So why aren’t you my type? Would you be mean to me, or try to send me inappropriate pictures? Or rub your cats in my face and send me into anaphylactic shock? (He has a couple.)
Him: None of the above…I’d actually treat u like a queen….but I’m sure my cats would cause an issue……hence..not ur type??
Me: Yeah – I looooove cats (and dogs), but have to take four meds and only hang out for two hours, tops. Maybe in my next life I can have pets. 😦 So best wishes to you in your search!
Him: Well….I could always,come over…undress and.hang out. No cat then. 🙂
Me: Would it surprise you to know that’s not the first time I’ve heard that offer?
Him: No….but I’m sure I’m not gonna be the first you say yes to though…
Me: Well, that got weird.
Him: Lol….how so?
Me: It’s never fun to be on the receiving end of implied sluttery.
Him: Oh…no…I was implying the opposite my dear. That you have yet to accept an offer…
Although I’d dig being the first…. After 8 hours: Guess not I didn’t bother responding. How would you respond if he acted the exact same way he claimed he wasn’t acting? It boggles the mind.
Kid, 26, 80 miles away:
Him: Hi you’re sexy (I’m marginally impressed that he knows the proper usage of “you’re” but not enough to reply)
Man, 48, local:
Him (obvious copy and paste without reading anything about me): I am a single father, a bit shy at first. New to the dating scene. I actually look forward to just meeting and getting to know someone, I want that someone to enjoy my company as much as I enjoy theirs. I do not like to play games, I like honest and sincere people Have a blessed Day…
Me: Hi, honesty and sincerity are great. Is your work winding down for the winter, or do you stay busy with projects?
Him: am off work for Now … How Are you doing ? would you like to txt me .. i don’t get don’t the site that much ….. what’s your name Beautiful
Me (cringing at being called “Beautiful” – not at all sincere – and the “blessed day” already rubbed me wrong): I’ve had a few stalkers, not comfortable with immediately giving out my cell.
Him: I understand How you feel … i can see you real an honest and open minded woman … and that what i want in my woman … what do you like doing sweet woman With only 45% of our answers being marginally close and 70% flat-out enemies, I am going to let him pass me by.
Then I got a message from a man, 30, and in the U.K., and I immediately went on high alert:
Him: hello how are you today?
Me: I’m okay, how are you?
Him: im doing well thank you
just back home from work
i ve had a long day
Me: Ah, you’re working late!
Him: a little bit but have u seen that im living in england and im just having a trip soon to MN and lookining for friends and maybe more….
Me (really, really frustrated at this point): Ah. I’m not open to a hookup or a long distance romance. I’ve got a lot going on with my health right now.
Him: what are u looking for in here ?
Me: I’m looking for a long term relationship. What about you?
Him: im same really just its not easy o meet the right one After this, I decided to put away my baseball bat before I smashed my computer to bits and give him a chance. We actually had decent conversation and it seems like he is sincere, but obviously I don’t know him at all, so I’m still on guard.
Man, 38, Philadelphia:
Him: hi how r u
Me: I’m fine.
Him: Don’t let the distance fool u I get to fly for free
Me: So, whose photo are you using for this site? Crickets. I did a reverse Google image search and found that he had downloaded some photos from a bodybuilder’s site who was in the UK competing at the same time we were chatting.
Lastly, I got a message from someone that I knew 24 years ago. My gut reaction was to say “CRAP!!!!” because I’ve never lived in a city long enough to have my past come back to me like that. Now that I’m back in my old stomping grounds, I have to reconcile concepts like my family being fully aware of my dating life, and for previously-known people to find me again. I asked this guy about what his experience has been on OKCupid, and he said he’s had bad luck. I commiserated with him and told him that a lot of guys were just approaching me for sex, and he said he was getting the same thing from the ladies. (Really???? Man, I have a hard time believing that. I mean there’s always going to be the ones who have been married for 20 years and want some action, but I don’t think that’s all of us. Maybe I’m naiive.) He told me that not all men were just looking for sex. I then reminded him that he messaged me out of the blue about 2 years ago on Facebook to tell me that he was horny after we hadn’t talked for 20 years. His reaction was, “Oh, sorry about that – I must have been a little drunk.”
On Twitter, amid the hundreds and hundreds of posts flying around on my feed last night, one stuck in my mind, and it still galls me. It said something to the effect of, “Even if you aren’t religious, you can still offer prayers in support of Paris.”
I didn’t want to get in a war of words (or 140 characters or less) with a stranger, especially when there are bigger, badder things to be worried about. However, it’s enough of an issue with me that I would like to point some things out.
First of all, prayer is an integral part of religion. Any religion. If I’m not religious, that means that I don’t believe in religion, and therefore I don’t believe in prayer.
Second, religion is based on arrogance. Let me qualify that statement by explaining that every person thinks the religion they follow is the “right” religion, and believes that every other religion is the “wrong” religion. The monotheistic religions we hear about the most – Christianity, Judaism and Islam – are only a portion of what peoples’ belief systems are based upon. There are something in the neighborhood of 4,200 religions being practiced today. Which one is right?
Third, religions are created by humans. I’m sure you’ve heard of people saying they are going to “create their own religion” or “start their own church.” This is how all belief systems are born. Each faction comes up with its own rules and rituals. Think about Scientology: It was created by a former Navy guy who wrote science fiction. I mean, c’mon – what the hell is a “space opera” anyway??
Fourth, religions rely on mystery and lack of education. Leaders are always touted as knowing more than the rest of the followers. They are always revered for being more “blessed” than everyone else too. This is how religions continue to thrive. Think about the infamous Warren Jeffs and his “flock” – they all believe that he is some sort of prophet, and they hang on his every word. None of the kids growing up in the group know how to read or write properly and have memorized church elders as their only education. Obviously this is a famous group often singled out for its cult-ish behaviors. Pull back a little and look at all of the religions with the same eyes, and realize that leaders and organizers rely on the followers not questioning anything, or if they do, always circling back to the idea that the leaders know best. With all of the scientific discoveries we have made in the past century, how can anyone still believe in a virgin birth?
Fifth, believers tend to assign human characteristics to the objects they worship. For example, all of us have heard, “God will be angry” or “God will be sad” if we do certain things. Says who? We do. That’s right, humans.
Sixth, non-believers are not amoral. I don’t steal, I don’t cheat, I don’t kill other people or intentionally harm other creatures. I live a pretty upstanding life, and that is without following one or two particular religions and relying on them to be my conscience. Here’s something interesting: In some areas of South America, before Christianity was introduced, there was less crime because everyone lived under the same code and worked together to make a harmonious community. It was truly shameful to steal or kill. After Christianity, crime became more prevalent – because they started believing that “God would forgive them.”
Seventh and last, what has prayer done for me? People offer to pray for me all of the time, and I thank them because it makes them feel better. I’ve been signed up for continuous prayer circles, many times, with or without my knowledge or consent. But this is what it boils down to: If I get better, then it was “God’s will.” If I don’t get better, I either didn’t believe hard enough, didn’t pray enough, or it was “God’s will.” With either outcome I have no hand in whether I get better or not. Honestly, I think that the idea of praying has allowed people to become lazy. They can post on Facebook or Twitter that they’re praying for the people in France, or for praying for starving children in third world countries, or for gun violence to end, but then they don’t actually do anything. They think it’s enough to say that they’re praying and it magically elevates them to being better people.
Do I believe in God? That topic is best saved for another time.
“The Anatomy Bequest Program at the University of Minnesota is is a whole body donation program.” As my family found out on Tuesday night, it is also the largest in the world of its kind. http://www.med.umn.edu/research/anatomy-bequest-program
I have always grappled with organ donation – but only because I’m not able to, ever. I want to. But thanks to all of this autoimmune stuff swimming around in me, and my eyes being damaged from the pressure being placed on my brain from this mystery disease, there isn’t any part of me that is safe to transplant into another person. This anatomy bequest program seems like the next best option. I envision baffling some of the medical students with my weird disease – or maybe they open me up and immediately figure out what the problem was, and it was nothing that could have been detected with scans. My brain will be sliced and sectioned and labeled for its “A-ha” moment, and I’m perfectly fine with that.
I sat with my sister and her little family, and we knew our brother-in-law and another family member were somewhere in the audience. We were in an auditorium on the U of MN campus to watch a show put on by students and staff as a thank you to the family members of the people who had passed and donated their bodies at death. I knew it was going to be a tough night. I could feel the sadness rolling off of the people around me and I immediately started choking up. I had tears during the first performance, a pianist playing a Debussy piece. A little of the tension was relieved when it was announced that a trio was going to perform a Lynyrd Skynyrd song and an old hippie in the section next to me let out a gruff and enthusiastic “All right!”
The performers took a break and a slide show began. Each donor was being shown in pictures chosen by their spouses or families, with Joni Mitchell’s version of “Both Sides Now” playing. I knew our sister was going to be there on the screen very early on alphabetically and the tears came again. After her time in front of the crowd, I just closed my eyes for a while. People around me were sobbing quietly. I have no idea how recent their loss was, but it really doesn’t matter, because we were all there for the same reason. We loved our people.
The performances continued after the slides made it through the L’s; one poetry reader encouraged us to hold hands with the people next to us while she read her poem about hands. I could feel my older sister and I freeze at the same time, uncomfortable with the suggestion. I leaned over to my sister and whispered, “I’m good.” We weren’t the hand-holding types.
After more performances, the slides continued with the rest of the donors. I’m not sure when it started, but as each picture was displayed, these little groups of people would clap when their person was shown. Some whooped a little; one woman yelled out, “We love you, mom!” There was more sniffling and sobbing, more tears. My sister and I were surprised to see a former classmate’s picture at one point – she had died only about 2.5 months prior from breast cancer. I imagined that her parents were somewhere in the mass of people, also proud and incredibly sad.
It turns out that our brother-in-law was just in the next section and so after the auditorium started emptying, he came over to us. He has always been a jokester, so it was especially heartbreaking to see him openly crying. He apologized when he hugged me, which is what we all do when we think we have to hide our pain. He is the one I worry about the most. He is now alone in his big house, a home that has so much of our sister still in it. She had MS and was confined to a wheelchair for most of their marriage, and the house was modified to accommodate a wheelchair and scooter. He cared for her, turned her, carried her when she needed help getting to the bathroom. They were each others’ best friends. He couldn’t even take much time off from work to mourn her because he had used up all of his allotted time to make sure she was comfortable in her last two months while cancer took over.
I know our brother-in-law mourns deeply. I am having a hard time finishing this post because the grief keeps crashing into me in waves, and I have no doubt that he feels it more than any of us. My singular wish for him is that he will be able to find someone to love again when the time is right. I don’t like the idea of him holding onto the memory of our sister for the rest of his life and turning away from another great love, and I don’t think that is what she would want for him either.
I am grateful to the U of MN for having this program that allowed us to come together and celebrate the giving and joyful heart of our oldest sister.
Warning: Read at your own risk. Adult situations discussed.
Okay, so we know about Mr. Friday Night and his toe and pantyhose fetish. I did him a solid and dressed up and painted my toenails to his specifications. It wasn’t that big of a deal as far as fetishes go – not like he asked me to shear a sheep so we could screw on some real lambswool.
Another guy on OKCupid caught my eye. I was actually looking forward to chatting with him because according to the algorithm, we answered over 90% of our questions the same (or similar enough). His profile had enough funny stuff to show that he had a good sense of humor, and we had a love of the arts, board games and museums in common. Pretty promising, right? So I struck up a conversation with him, and during the course of chatting, I discovered he was a brass player. I’m going to christen him Gabriel.
Gabriel wasn’t very forthcoming with info about himself when I would ask him open-ended questions. He would give me one or two-word answers, or it would take him a long time to answer. Then he started dipping his toe into the sex pond, and he couldn’t stop talking.
At first Gabriel wanted to know if I liked to cuddle, and I answered yes. Then he started asking me about my favorite sexual acts. I informed him that I had a FetLife page and he revealed to me that he did as well, so we checked out each others’ pages. Gabriel then confessed to me that he wasn’t really single, like his profile said – he was separated, and he claimed that he was living with his parents and his wife and kids were living in the house. However, he assured me that there was no going back and that divorce was a sure thing. We talked more about our likes and dislikes, and Gabriel admitted that he had only been intimate with three women. My number is nowhere near his – I mean, I have never been married, and for the majority of my adulthood I haven’t been in a relationship. We had a chat about STDs.
Eventually we worked out a date night. At first it was on the premise of cuddling and a movie. Then it evolved into him asking if we could do certain things. Gabriel also specified what he would like me to wear – which included a skirt, pantyhose and heels. Luckily for him I had gotten two pairs of pantyhose because of Mr. Friday Night, so I could accommodate that request. I told Gabriel that if his penis was going anywhere near me, he had to tell me his last name.
The first time we got together was very nice. We did cuddle, and we both got some action. He reminded me a lot of the guy who plays Kelly Severide on the show “Chicago Fire,” though a bit beefier. When we were done messing around, we laid in bed and laughed and talked, and Gabriel did his impression of Christopher Cross/Michael McDonald/Peter Cetera, which he admitted sounded like the same guy. We discussed his frustration at not being able to find a job that matched his degree, and I offered to put some feelers out with my friends. It’s just the sort of exchange you’d expect with friends with benefits, which is what I assumed this would be, since I couldn’t go on real dates with him.
The second time he came over, Gabriel asked if I could do some very specific things he wanted to try that he had listed on his Fet page. I will just be clear and say that it was stuff he wanted me to do to him, not with him. Gabriel also asked me if I could wear a specific undergarment, and since I had it in my possession already, I obliged. He asked me if I would ever try some of the things that he wanted to, including three-or-moresomes and anal sex, and I told him I had tried them – many times – and I wouldn’t do them anymore. First, I’m not attracted to women. Second, my health problems extend to my bowels and anal sex is painful. So keep in mind that this conversation about my hard limits happened face to face. Gabriel left after what he wanted to happen happened. I gave him a smooch and told him it was okay, he’d get me the next time.
Between the second and third dates, we chatted via text a few times, but it was only late at night, and he would only talk about sex. Gabriel would ask things like, “Do you ever just walk around your apartment naked for no reason?” I told him no, it was never for no reason – usually I was changing clothes or hopping in the shower. Then he would ask me if I was playing with myself. I get weary of being asked the same questions every time a guy talks to me, so I stopped playing along – I didn’t pretend that I was doing that just to make him happy. I even reminded him a couple of times that I was a whole person, not just interested in sexual acts. I mean, for Pete’s sake, we had a lot of common interests.
For our third get-together I didn’t have to wear any specific clothing, thank goodness. We messed around (no p-in-the-v, but honestly, that’s not the only sex act as far as I am concerned), and had another talk about my hard limits. Gabriel said that the next time he came over, he thought it would be nice to just watch a movie, and I agreed.
Gabriel’s texts became further spaced out; sometimes I would send him a quick note to joke about something that popped up in the news that we had discussed. He would only text me to ask me if I was playing with myself. Then he started only asking me one word at a time: “Anal?” “FFM?” “Swallow?” My tolerance level is pretty low, especially if I have to repeat myself. I know what guys think, which is that if they ask the same question enough times, eventually they will wear us women down into agreeing to do stuff. After I said no, Gabriel had the balls to tell me that maybe I would like that stuff if I tried it – as if our numbers were reversed and I had had three partners, and he had…not three.
I finally texted him back to say, “Look, I have tried what you have listed, and I’m not going to do it.” Then I told him, “I feel like we get along well enough, but now you’re listing stuff that we have talked about that I’ve already told you that I am not interested in revisiting. I don’t want to hold you back if you want to find someone to help you check these things off your list.” Gabriel hates anything that is not “Minnesota Nice,” meaning he would have preferred me to agree to do these things to fulfill his porn-driven fantasies, or to lie to him and tell him that I would do them eventually. So Gabriel has cut off all communication to me.
My prediction for Gabriel: He and his wife are going to resume their marriage “for the sake of the kids” after he has checked everything off his list. And they’re going to hate each other.
I have been chatting with another guy from OKCupid who had actually hit me up on FetLife first. Here’s the kicker: he has a foot fetish too. So one of the first things he asked me to wear if we met is a skirt, pantyhose and heels.
My only conclusion I can come to is the reason these poor, deprived men in Minnesota crave heels and pantyhose is because it’s thirty below zero all of the time and it’s not safe to walk in heels in snow and ice. Snow boots are decidedly less sexy.
Please enjoy this song by one of my favorite singers, Rachael Yamagata. Every time a man asks me to dress up to his specifications, I feel like a paper doll.
The Sick and the Dating 