Whenever you are feeling a little down, do a little haka in your living room. Guaranteed to make you feel invincible.
(Bring your neighbors cookies afterwards to apologize.)
fibromyalgia
Send Up The Bat Signal
From Thursday morning until today at around noon, I was so excited. I felt this enormous surge of energy, and I wanted to do everything – go to the movies, go on job interviews, retrieve my car from where it’s being stored and drive around, go on real dates, go to Costco and buy 30 rolls of toilet paper. I felt like my old self. For 108 hours, I felt capable. I was sitting and standing and walking just like everyone else. The vertigo was still present but I wasn’t running into furniture or doorways.
The weather has been unseasonably warm, so I went on a few walks around my neighborhood for the first time since moving here. The last one this morning was to walk a few blocks to Redbox to rent a few movies. And just like that, the drooping face appeared again. As I was approaching my door, my steps became slower and slower, and all the while I was chanting to myself in my head, “No, no, please no.” I often have to try to explain the sensations to doctors and nurses who haven’t seen me before, and this is the best I have come up with: It feels like a big slab of raw steak has been laid across my forehead and left eye. The weight of it and the paralysis makes it impossible for my eyelids to stay open, and if you look closely, you’ll see my left eyebrow twitching because the nerves are misfiring or losing their connection completely when I try to move it. Everything becomes very blurry and starts swimming in front of me, kind of like what movie directors do to try to portray fainting from the viewpoint of a character. I lose depth perception and peripheral vision. I also become immediately exhausted.
I had seen my sister before I went on my walk and we were discussing the mystery of the symptoms lifting. After I got back, I had to send her a text saying, “Fuck it. Sell the car. It’s back.”
Today we talked about how this has been a really tough year. We lost our oldest sister, and then just a few days later my friend died, and now our uncle is running out of options to treat his stage IV throat cancer. My sister has health issues herself, and though she has told me numerous times that she is happy to help and that she knows this has been difficult for me too, I am fully aware that I am a burden to her. I don’t want this to be my permanent reality.
Some of my friends have gotten involved with getting in touch with people in the TV industry to see if there are news stations or shows that would be willing to feature my story. (I told one person that if I got on “Ellen,” I don’t want a car or cash, I want a doctor.) An uncle’s girlfriend is a freelance writer and we have been in contact with countless publications; I have been turned down by all of them because they want a happy ending. I am still hoping that I can get some exposure and a fire will be lit under someone qualified and knowledgeable enough to deal with this shit.
Oh, and Mr. Friday Night is done. When he was here, he asked me over and over again if he could return on Saturday for some more nookie. Late Friday afternoon, he texted me things like, “Miss me yet?” and “I’ll be back, I really like you.” I never asked him for another session, so this isn’t me baiting him to push him to say that he wants to see me again. Late Saturday afternoon I texted him asking if he was still planning on coming over, and his response was “:))))).” That was his last communication. So I sent him a text this afternoon telling him that he shouldn’t beg to come over and then act like I died – he needs to be more up front and honest with the next woman (Bye, Felipe!). It’s depressing that he got any of my good hours. Fear not, though – I have been chatting with others on OKCupid and initiating them into my weird and wacky world. One guy is 14 years younger and a great conversationalist but he’s so young. I may use a cane, but I’m not comfortable with being a cougar.
As disappointing as today was, I am happy about one thing: a ghost from the past contacted me through Twitter. I’ll call him Socrates, as he is a deep-thinking man. Socrates found me just by chance when he was searching for a former client’s info, and when I saw that he was following me, I sent him a message. I have actually been trying to look him up for the past few months. Socrates and I met when he was going through an especially difficult time; his business had folded, he was nearly penniless, his family was spiteful and sucking his soul dry, and he didn’t have access to healthcare.
I enjoyed his company despite the turmoil that burdened him and seeped into our time together. Socrates is incredibly intelligent. I could actually hold conversations with him that did not center around sports or the weather. He is much more concerned with the human condition and continuously trying to improve himself and the world around him. But the one thing that broke my heart, as it always does, is hearing that I am fine to have sex with but that person isn’t going to get into a relationship with me. And Socrates gave me that speech. I can’t help but take that personally, no matter if I also realize that it’s not the right time or the right person for me. Some day I’d like for some man to tell me that all of my parts are wonderful, not just the sex parts.
So we entered into a true friends with benefits arrangement. I helped Socrates to pack up his apartment so he could move. I found a sliding fee scale clinic so that he could try to get the healthcare he so desperately needed and wanted, just so he would know that there were options. I also gave him blowjobs he rated as, “Ohmygodthatwasthebesteverthatwasaten.” Socrates was always open and vocal with me, never just saying what he thought I wanted to hear, because he values authenticity over flattery.
Our last contact (and correct me if I’m wrong, because I know you’re reading this, S.) was over email in 2007. Socrates was overwhelmed with every part of his life and not interested in communicating with anyone for the foreseeable future. I was left to wonder if he was okay and how he was surviving because the messages simply stopped.
That brings me to today, and our renewed connection. I am relieved to know that he is in fact okay, and that he has done some serious work on his soul to try to repair some of the damage and to release the parts that are past rescuing. Socrates is also married! He and his wife seem to be true partners and supportive of each other, which is the best anyone can hope for in a loving relationship. Socrates is now in a position to help me with spreading the word about this crazy disease, and I am gratefully accepting.
The Weirdness Of You
Let your freak flag fly.
The hardest thing to do is to find someone who loves your weirdness.
This week I initiated another person into FetLife. My Friday date has a pantyhose and toe fetish and before coming over, he put in very specific requests for dark red toenail polish and nude pantyhose/stockings. I asked him if he had a profile on Fet. He had to look it up! I would not be surprised if he suddenly appeared. However, his fetish does not seem to be hardcore – he enjoys other acts as well, thank goodness. Main reason: I’m not a foot model. In fact, some have called my feet “Flintstone feet,” not exactly drool-worthy. All of this week I have been soaking, scrubbing and grinding away calluses because I was very aware that these toes could end up in his mouth – and they did.
As far as fetishes go, his is pretty harmless. However, I still had to accommodate him and find pantyhose and nail polish. I didn’t give him a list of anything that I required. But so far, he has won points with me because he isn’t telling me that I’m not doing “enough” to get better, or making me feel like a loser for not being able to work or really, just leave the apartment for more than 30 minutes. He also didn’t freak out when I told him that I had to wear wigs. That one is a big one! The real test will be to see if he sticks around and/or comes back again in the near future.
Something strange is happening with my body. I’ve been dealing with these crazy symptoms since my shunt failed on April 10th, but for the past three days without changing my medications, diet or supplements, I have been able to be upright for hours. HOURS. Like a normal person. I’m still having some issues with vertigo, but the pressure isn’t so strong on my brain that my face becomes paralyzed like it usually does when I’ve been upright for 30 minutes.
I honestly don’t know if the change is because it’s not terribly hot or cold. I don’t know if it’s because the humidity is relatively low for this part of the country at this time. I don’t know if it’s because the air pressure is at a certain level and is holding steady. I don’t have a clue.
But because I don’t feel like I’m dying, I suddenly have energy – at least, I’m back at fibromyalgia-style energy. I feel guilty for not getting in my car, which is currently being stored at my sister’s house and being prepared to be sold, to go to a concert, or the library, or the grocery store. I want to go out on dates like a real person! I have even thought about working because when I have this energy zinging through me, I hate to be idle. (Honestly, that’s what gets me into trouble. I either get really vocal on Facebook or I chat up a bunch of men on OKCupid.) But I don’t know why this is happening, and I don’t know how long it’s going to last.
My reminder of that is the notice I got from Metro Mobility letting me know I am eligible to use it until May of 2019. It’s a service set up through the bus system in the Minneapolis/St. Paul area for people with disabilities who can’t use regular buses. Normally I can only take the bus if my aunt rides with me and takes care of the fare as well as keeping an eye out for our stop because I can’t see well enough. I have to ride the short bus now. Don’t get me wrong, I’m grateful for this service. I just really like my independence and, you know, being able to see, and using this emphasizes just how handicapped I am and what I have had to give up.
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In another nod to normalcy, I just got a message on OKCupid from a guy who is seven years younger than me who claims to be “long and thick just for [me].” I did specify in my profile that I didn’t want to receive any penis pictures. At least he stuck to the rules and described it instead?? I replied and told him his DNA determined his length and girth, and has nothing to do with me.
Sorry Seems to Be the Hardest Word
When I was 21, I worked two jobs with the goal of saving up enough cash to travel for a while. I also wanted to pick a new place to live, but I wasn’t sure where. My best friend and I packed up my car, converted most of our cash to traveler’s checks, borrowed my dad’s 6-person tent and took off. We stayed for a month on Mackinac Island to earn some more cash. After that, we cut across Canada and started at Niagara Falls and camped our way down the entire east coast. It was my first encounter with the ocean.
I almost set up residence in Hilton Head Island, but I kept seeing all of the hurricane evacuation signs and they freaked me out. As we looped back up and cut through Tennessee, I considered Nashville, but then I figured all of the country music would make me want to jump off a tall building. Later we cut back through Missouri and headed to the southwest, and I finally ran out of money in Albuquerque, so there I stayed. Within a short amount of time I landed two jobs and a place to live. My friend opted to go to the Everglades in Florida to live and work.
A year later, she made her way back to New Mexico, and I was happy to have a good friend so close after floundering for a year with trying to make friends. We decided to take on dating together. Back in 1996, the best way to meet the opposite sex besides getting tanked at a bar was either posting or answering personal ads published in newspapers. Let me take just a little time out and post an ad that I found, clipped and saved for these almost 20 years:
SPM, 31, seeking female amputee, age 18-99, for romance. Your beauty and grace astounds me. Box ID 23394.
Talk about a fetish!
My friend and I placed an ad saying something to the effect that we were looking for double dates. The ad was free, but to initiate a call to someone is where the fee kicked in. We got a couple of bites but they were from men who didn’t have single buddies. One was a guy I will call Bear; he had a really deep voice and was very articulate, so after talking to him we agreed on a date.
Bear was tall, 6’2, with glasses and a bookish manner – or if you prefer, he was geeky or nerdy in general. Our first date was right after Christmas that year. Immediately, we hit it off. We hardly spent any days apart and were on the phone constantly. I remember telling him one time that I couldn’t get close enough – I wished that I could crawl under his skin and live there.
A month after we started dating, we were at a restaurant eating dinner in the middle of some serious winter weather. We looked around the place and noted all of the kids having meltdowns and said, “I’m so glad we don’t have kids.” Bear then said, “Why don’t we go to Las Vegas?” We both had never been and Bear liked to play blackjack. He revealed that he had saved up a wad of cash (something like $600, which was a pretty good chunk in early 1997) and decided he wanted to use it to take a short trip with me. We ran to our respective places and quickly packed backpacks and called for tickets. We didn’t even take time to book a hotel.
When we arrived, we realized our mistake – it was the electronics convention, and EVERY hotel room was booked. However, our chain smoking cabby with the biggest, flashiest earrings told us that the Happi Inn was a sure thing – she always took people there for situations like these. Sure enough, they had a room. And what a room it was! Mirror on the ceiling, garish orange bedding with a bed sagging horribly in the middle, one TV station and cockroaches in the bathroom. We were also being price gouged because of the convention, $80 for the night. We did the best we could because we were flying out the next day.
It was a fun day. We played slots, and Bear got three blackjacks in a row, which was noticed by the pit boss, and we were rewarded with two tickets to the Ceaser’s Palace buffet. We took many pictures around the strip and visited M&M World. We even saw our first Cirque du Soleil show, “Mystere.” It was a fun little trip…or so we thought, until we tried to fly back. Because of snow storms all over the U.S., we couldn’t get a flight home until the next day at 1 p.m. I left a message on the work answering machine to tell everyone I was momentarily stranded and that I would be back to work Tuesday. The managers didn’t think to check the messages when I didn’t show up to work Monday morning, and they were in the process of calling the police to do a wellness check on me when I called in to make sure they got my message.
It didn’t take long for Bear and I to move in together. He was my first love (though he had had other loves before me). I loved him deeply. He was a patron of the arts. He wrote me love letters. He talked about the future.
However, there were problems at his workplace, and he decided to try to land a job closer to the Midwest or east coast. He almost took a job in Allentown, PA, but decided to take an offer in Cincinnati, OH instead. It was still early in our relationship and I wasn’t ready to say goodbye, so I moved with him. I figured I would get a job after we relocated. We rented an apartment on a short lease without seeing it first on the Kentucky side of the Ohio River.
Shortly after we moved to yet another city where I didn’t know anyone else, Bear told me to make my own friends because he wasn’t going to be my entertainment. So I did. First I went out a few times and partied with a lady I met while working a temp job as a proofreader. Later I partied a lot with the people who worked with me at the large law firm. It seemed that his declaration was the turning point in our relationship, and nothing was ever the same after that.
Bear also became somewhat addicted to the internet. His nerd side was strong – his mind was blown with the potential the internet held at that point – and that meant that he was on it constantly. Part of the problem was that resources were available that never had been before, like being able to buy video games that weren’t always sold in the immediate vicinity. Oh, and the porn…
So the problem was that money that was supposed to go for rent was being used up by video games and porn. I was unhappy because there were a few times when Bear would blow his portion of the rent on games and I would have to pay for everything. He also spent money and time on porn instead of joining me. There were so many times I would beg him to come to bed, and he would refuse. I felt ugly and undesirable. Since I was living with a nerd, I was becoming more computer and internet savvy myself. I started to go to chat rooms, and then I began talking to men in private chat sessions.
My first trip to Europe was in May of 1999. I was visiting a university friend who lives in England for ten days. I had been saving and saving, knowing that even though I had a free place to stay, there would still be lots of expenses. A week before leaving, Bear revealed to me that he didn’t have the rent money again because he had purchased video games. I was absolutely furious. Like a true daughter of an alcoholic, my brain went into dissociation mode and I completely forgot what Bear’s face looked like. In fact, when he picked me up from the airport at the end of my trip with a fist full of flowers, I walked straight past him like he was a stranger – he had to call out my name and grab my arm.
A few weeks later I met up with one of the men from the chats while Bear was working. I was so eager that I failed to properly turn off the computer, so the message box was still there for Bear to see when he got home from work and the house was empty. Of course he read it, all of it. When I got home, he was sitting on the edge of our bed, looking absolutely crushed.
We broke up but continued to live in the same apartment and sleep in the same bed because we were still obligated to the lease we signed. Luckily it ran its course within two months and we could move on. We actually stayed friendly through the breakup – he helped me move into my new apartment, and he joined me at a friend’s house for Thanksgiving (my friend’s mom introduced us as, “This is Kiwi and this is Bear and they were dating and now they’re not, so I don’t know”).
Bear later went on to marry one of our mutual friends and have two sons – the two sons we used to discuss when we were a couple and talking about our future. He even named them the names he had picked out then.
Today I had a chance to trade messages with him and catch up. Bear is now divorced and in a relationship with another woman, and his sons have adjusted well to the major shift in the household. We exchanged information about our families and friends. I also sincerely apologized for cheating on him, acknowledging that I did not have the best tools at age 25-26 to deal with my anger and disappointment, and I hurt him deeply. He very graciously told me that it was forgiven and forgotten. I cried big, fat tears.
It’s Raining Johns
This weekend I received two random friend requests on Facebook, both men claiming to be named John. One had no friends listed, his background pic was of an army unit crouching on the ground and his individual photo was of a guy who was about 26 with full sleeve tattoos. There is nothing listed like his hometown or location, only that he is divorced. The second was of a guy who looked middle aged and had about 8 “friends,” all women, and his cover showed him getting into the European driver’s side of a luxury car. Before I accepted their friend requests I did a reverse lookup of their photos to see if they were borrowed. No hits, so I accepted, which is pretty out of character for me. Wouldn’t you know it – they both hit me up within 20 minutes of each other to introduce themselves 24 hours after I accepted their requests.
John #1 (Army): where are you from..
Me: I’m from Minnesota. My page contains a ton of info, but yours has none.
J1: who told you that my is none
wow nice to meet you, I am from Austin,Texas and I am currently stationed now in Afghanistan for peace keeping we need you prayers..
Me (cringing at the prayers reference): I have a friend in Austin. Are you Army, or Marines?
J1: Are you married and you have any kids? and what are you doing for a living……and how old are you
Me: I am not married and don’t have kids, it wasn’t my destiny this life. I’m 41.
J1: i am single divorce my ex cheated on me and i have 1 grown kid and one adopted son…….i am 42 now
Oh I see, would you like to get remarried again…?
Me: I’ve never been married.
J1: i have been in afghanistan fro 14years now
oh Okay, would you like to be in love again..?i am looking fro the right women to get in love with again ….how about you …how about you
Me: Well, the love question is a tough one. I am not sure how this brain disease is going to play out, and because it’s so rare, the doctors don’t know either.
J1: why don’t you want to be remarried again or be in love with someone again
Me: Quite frankly, I don’t know if I will ever be well enough to date again.
J1: that will never be true
Me: You are optimistic? I have had 10 surgeries in 4 years, the doctors have decided to stop operating on me for now.
J1: why dont he operating on you
Okay, at this point I’m thinking there’s a little Google Translate going on!
Me: Because all of the operations have failed to fix the problem. So are you using your Facebook page strictly to find romance?
J1: no i don’t use it
(Except for now??)
J1: i am looking fro the right women to get in love with again ….how about you …
Me: I’m not into women.
J1: why not?
Me: I’m just not. I see tatts on your profile pic. Where have you been getting them done?
J1: there is no tatts on my profil pic
(I can see that the guy in the picture has tattoos from his shoulders all the way down to his wrists, full sleeves)
Me: I am on a laptop and can see pictures on a larger scale, it looks like you have full sleeve tatts. Is that not correct?
J1: there is not some thing like what you are saying to me
Me: I can see the top of the bicep in the picture.
J1: dont make me to be came angree with you
Me: So you don’t have tattoos?
J1: yes i have but first i did not know what you were saying..What are you looking to meet on here..?
Me: I’m not looking to meet anyone on Facebook. I’m also not doing internet dating.
J1: why
Me: I’m not well enough to date right now.
J1: why dont you want to be in love with me or any one
Me: I have to concentrate on my health right now.
J1: i no thta you have to concentrate no your health now but you can be in love wells concentrate no your health
Do you have Yahoo Messenger Id were we can get to know more about each other..?
Me: I’m sorry, I don’t use Yahoo messenger. I can’t put any energy into dating right now.
J1: Oh Okay, can you go to http://messenger.yahoo.com/ and download it now..?
I was hoping that it was lights out soon for him, since it was about midnight his time when he messaged me…if in fact he was where he said he was.
Then John #2 hit me up:
J2: Hello C____ . you have a good and nice name , i really like you so much to be your and i will like to be friend, Have interest i knowing more about you, am a nice good and honest person 49 years of age . hope to hear from you soon .
Me; Hello John, where are you from?
J2: Am from Brazil but i live in Californian
Me: I noticed you were getting in on the European side of the car in your cover photo.
J2: I took the photo when i was in England , do you like the photo
Me: It’s a great action photo.
J2: Lol … you look pretty
How old are you if i may ask ?
Me: Thanks. I’m not on Facebook to date or make hookups though, just be warned.
J2: Why do you say that ?
Me: Well, I usually don’t accept friend requests from people I don’t know because I post somewhat personal stuff.
J2: But why do you accept me , don’t you like me ?
Me: I am always open to making new friends, but there are some things I post on Facebook that people who don’t know me wouldn’t understand.
J2: I understand that so very well, i don’t get into people stuffs i just like the person you are and i am looking for friendship that’s the reason why i send the request
(Yeah, right!)
J2: Am 49 years of age How do you see me ? But right now am in Africa for work
(Ah ha – there it is!!)
Me: What are you working on there?
J2: I work as an Contractor and right now u got a work of roads so am making it and directing am also the Supervisor.
what do you do for a living ?
Me: I am not well enough to work now. I’m not sure if I will be able to work again. I have had 10 brain surgeries.
J2: Ohh so sorry to hear that what has gone wrong with your brain ?
Me: It is a rare disease – so rare that I might be the only one with it – and none of the doctors know what it is or what to call it. They have tried 10 operations and have decided for now to stop operating.
J2: How did it go on with you ? Qhat are the observation, i think you are on good track right now and i don’t think there is something wrong with you but i may not understand please explain
Me: You mean, how did I become sick?
When I am upright, the fluid in my brain presses on the nerves that lead to my face and also puts pressure on my brain stem. My face becomes paralyzed and I can’t see, and it also makes me very dizzy and unable to walk.
J2: and how do you get along ? does that have any problem with the way you talk or send message ?
Me: I can’t drive or walk great distances. When I lay down, the fluid moves away from the nerves that it presses on, so I can see nearly perfectly again. So in order to do anything, I have to be laying down flat.
J2: i can send you some african herbs and will heal you but it’s cost
Me: lol – no thank you, no herbs necessary.
J2: You don’t believe in herbs ?
Me: That would be like throwing parsley down your clogged drain.
After that, crickets.
This just reminds me of a Family Guy episode that a friend sent me a long time ago – it has to do with a guy insisting that a few minutes with his penis would cure a woman of all of her problems. I am convinced that is the universal belief around the world.
The Professor
Yesterday I received medical records from St. Joseph’s Hospital in Phoenix for all of the 10 surgeries I had there, plus numerous visits in between to the ER. The packet included one entire ream of paper with printed chart notes, EKG readings, surgical notes, allergies, and even my signature on some documents. What they didn’t print out on paper they included on a disc for me. Now that I have to set up a whole new team of doctors to help me through this Magical Medical Mystery Tour, I figured it was best to keep track of things and distribute them myself instead of relying on others to gather the info. It’s a plus that I have a laser copier/fax/scanner/printer here at home so I make sure everyone gets what they need.
Some things were a little tough to read. For instance, nearly every time I told the neurosurgeon or the ER staff that my shunt wasn’t working like it should have been, they would tell me that everything looked fine in my scans and that it must be “something else.” After I would beg and plead with the neurosurgeon to do another surgery so I could function again, he would again tell me that everything was fine and he couldn’t say exactly why I had symptoms, but he replaced everything. One of the times was in February of 2013; Dr. N. was out of the country teaching in Japan, and I went into full failure – face drooping, blurred vision, fatigue, vertigo, and I was walking funny, like a cat with anesthesia from a vet wearing off. One nurse told me to go to the hospital four miles away from my house to see if they could treat me for headache. That hospital ended up doing a nuclear shunt study, which they had NEVER done before – I had to tell the radiologist where to inject the nuclear material in my shunt under live x-ray – and they kept me for six days. At the end of the six days they told me the study was “fine” but opted to transport me to St. Joseph’s because Dr. N. was back in the country. I was at St. Joe’s for another six days, during which time Dr. N. did another surgery on me. Now that I’m seeing what was in the report, Dr. N. actually agreed that the shunt flow was sluggish. It wasn’t my imagination and everything was not “fine.” Suckage. I wish they would trust me more when it comes to knowing what’s going on with my body.
I remember vividly the first day I went to St. Joseph’s when I was still trying to get a diagnosis. At that point I had been to at least a dozen doctors over the course of 10 months. I waited to go to the ER until the day after my birthday – I wanted to have a really good dinner out with friends, because I knew I was probably going to have to go through a little hell. At the time, I was dating this guy I will refer to as The Professor, and he accompanied me to the hospital.
We met through OKCupid. It seemed like he and I had a lot in common. He was educated and was planning his first trip to Europe. His picture was just a face shot, and I could only make out that he was smiling and that he had dark hair. We met in January after exchanging some friendly notes; in person, I was a little startled because he had on blue jeans with a bright white belt and bright white shoes, and the pants were sitting high up on his very rotund belly. The Professor’s hair was also dyed dark brown, which was unfortunate – because the very large bald patch in the back shined through like a pink baboon’s ass. I still wanted to get to know him because I’m much more attracted to brains and a certain amount of worldly experience, and so we fell into dating exclusively.
The differences in our beliefs and backgrounds became apparent over time, as they usually do with anyone you date longer than one night. First, he grew up in the middle of small town Indiana – and was exactly like the people I so desperately wanted to get away from in the little town of 300 I lived in in Minnesota for five years. He was strictly a meat-and-potatoes, salt-and-pepper guy – he refused to eat any vegetables or try anything that had flavor. He hadn’t ever even seen a bagel until he was 24!!! To him, those were exotic. He worked at the law library on the main campus of Arizona State University (ASU) and held a bachelor’s degree, but was re-enrolled for his Master’s. However, ASU let him teach one class: Critical Thinking (hence the use of his nickname “The Professor”). We would laugh over some of the things his freshman and sophomore students would come up with in who exactly they hated in the world but couldn’t explain why. But what really bothered me is that he was in his mid-40’s and his mommy was giving him cash every time he got an “A” grade on a paper, and then he’d get a bigger amount if he got an “A” for an entire class. He bragged about how easy school was for him and how smart he was. I would ask him why his mom was paying him for good grades when he had just said how easy it was for him to get high grades. He did not like that question.
The Professor was also a big fan of comics. I helped him to make a transcript of some of his interviews as he was a contributor for an online publication for comics fans. The Professor would brag about how he was a much better interviewer than anyone else, but after putting together some transcripts for him, clearly he struggled with having an actual conversation and he was asking all of the artists the same exact questions. He was just talking to hear himself talk. I am not a fan of comics myself (despite many artists trying to get me hooked), so having to sit through that stuff was a little tedious.
When The Professor talked about his trip to Europe, I really had to bite my tongue. He was likely going to be scared by some of the cuisine (though in England he would fit right in because everything is boiled), but even more importantly, it was going to be a BICYCLE tour. I knew his weight was going to hold him back; when we were simply driving in the car or watching a movie, I could hear him constantly gasping for air and groaning with the effort. The Professor was a mouth breather and sounded like a monster from a horror film. He also had terrible allergies but refused to take allergy meds because he didn’t want to be a “pill pusher.” I found an OTC brand that dissolves in the mouth and he was in heaven. Even the brands that do not have dissolving tablets manufacture incredibly small tablets, so it’s nothing to swallow them. And since when is taking allergy medicine being a “pill pusher”?
Lastly, The Professor refused to wear antiperspirant or deodorant because he said he didn’t like how it felt. He was about 350 lbs. and like everyone else in a super hot city like Phoenix, he sweated profusely. One time when we sat outside of a restaurant after a meal and enjoyed the sunset, he put his arm around me, and his sweaty pit rubbed that sour smell all over all over my shoulders and wig. I hate having to wash my wig more often than is recommended because the fibers and cap wear out faster.
We had connected at a time when my symptoms were somewhat dormant; I could still see while sitting upright and still drive. However, when I became sicker and sicker and still had to deal with our differences, I debated sending him on his way. It was just exhausting. I am not good at projecting a poker face.
The Professor was with me after I spent a week in St. Joseph’s when the group of doctors filed into my room and told me they decided to operate on me. I cried like a baby after they left the room, and The Professor held my hand and tried to comfort me. But the next week when I was home again waiting to be cleared for surgery, I decided it was time. We sat down on my couch and I held his hand and told him that I didn’t think we were compatible. He told me he expected me to break things off because I would sometimes look at him like he was an idiot. I honestly can’t remember most of the exchange, but I do know that I ended it with telling him that I thought he ought to re-think his stance on deodorant. The Professor then said he didn’t use it because he was allergic to it, and I told him that just because he was allergic to one brand didn’t mean he would be to all brands – I broke out in hives from Secret products, so I went and found one that didn’t do that to me. I also called out the fact that he told me previously that he didn’t like it, not that he was allergic to it, and that’s a big difference.
Last year, when I was having a particularly rough night with pain and medication, I sent an email to The Professor saying that I was sorry about the way that I ended things with him and that I wished him happiness. I didn’t hear back from him, but after doing some searching on Facebook, I confirmed he’s up to about 400 lbs. and is engaged. Good for him.
Youth is Wasted on the Young
The summer I was 19 was a magical time. I don’t mean that everything fell into place perfectly and I knew what I was going to be when I grew up, but rather that I had a lot of firsts and I wasn’t burdened by disease. I had all of my beautiful, fine, soft hair and had no inkling that in four years I would be sidelined by fibromyalgia or that a weird brain disorder was looming over me.
I had managed to make it through my first year at university with my virginity intact. A couple of guys had tried to talk me out of it but failed. I certainly wasn’t holding onto it for a special occasion – I did not have any grand illusions that I was saving it for marriage or anything misguided like that. But by the time I finished that first year of college, I decided to let go of a few things, including going back for a second year, as well as that nagging virginity. I moved back to Mackinac Island and lived above the busiest bar on the island – very much a departure from the “Virgin Vault” the previous summer – and there was a constant whirlwind of many, many people to meet, both workers on the island and visitors.
Within the first week I was introduced to a guy who managed to get my knickers off within the second hour of becoming acquainted. At this point I just wanted to get it out of the way because I had heard too many stories about how it was painful the first time. Well, I didn’t have the experience of a hymen being torn or dealing with blood. Unfortunately, the guy didn’t believe that it was my first time because of that, and he was pretty rough (and also a bit drunk). I ended up with a lot of bruises. We went through a lot of condoms. We finally fell asleep in my bed (the bottom bunk in a 4-bed room), and I woke up in the wee hours suddenly startled by the fact that I couldn’t remember his name. I knew it was four letters, that was all. In his drunken slumber he kept elbowing me in the face while he rubbed his mug vigorously, so that was a zero sleep night. Not the best first time, but at least I got it out of the way – and thanks to his choice in seduction music, I still can’t listen to “Ziggy Stardust” to this day, even though I adore David Bowie. A few weeks later he came back for a repeat performance but I turned him down.
This was the year that I became acquainted with a lot of foreign workers. Within the first three weeks on the island, I knew them all. They represented England, Germany, Austria, Spain and Portugal. I got to make out with one of the Austrians, my first foreigner. He was very relaxed with sleepy eyes and permanent pot high. I imagine he’s some sort of public official back home now, he just had to get some partying out of his system.
About two months into my time on the island I did what a lot of seasonal workers did and got a second job. I was hired to be a hostess for a restaurant (now closed) and managed to also be designated as the karaoke host. For any of you that have worked restaurant jobs, you know that a lot of bed hopping goes on. This was my first foray into this business so I didn’t go hog wild. However, I did manage to catch the eye of two men. The first was M. He was tall with long, dark curly hair. When I think of him, I think of the saxophone player with the oiled up muscles and long hair that appeared in “Lost Boys” (see the picture immediately below). M. bounced back and forth between Naples, FL and Mackinac Island to cash in on patrons parting with big tips while on vacation. Normally M. was very crabby; I chalk this up to him being in his mid-30’s and having to work with youngsters like me. But at some point he lightened up and started flirting with me, and eventually worked up to asking me back to his place. It was my first time with an older guy, especially baggage like his – he had an ex-wife from England and a baby, and he was deeply wounded from their divorce. M. was passionate and strong. He also wanted to jump into a relationship. I wasn’t so sure because he was older, he was still planning on leaving at the end of September, and I simply did not have a lot of dating experience. I still remember the walk of shame back to my apartment in the early morning. My hair was tangled, my mascara and eyeliner were everywhere but on my eyes, I was wearing the previous day’s clothes…and wouldn’t you know it, some customers I had helped the previous day were the first people to see (and recognize) me.
The next night he wasn’t working, and all of the sudden a British waiter, S., became very flirty with me. He talked me into going back to his place that night. I know, I know – two nights in a row, different guys – slow your roll down! But again, I was largely inexperienced with dating and flattered that another handsome man found me attractive. S. had blue eyes and dark wavy hair, and his features reminded me of a much cuter Flea from the Red Hot Chili Peppers. He gave me a massage with the best smelling body oil I still haven’t been able to find since and we put the Sade album “Love Deluxe” on repeat to sleep to the rest of the night. S. was brooding and dark, and confessed that he was still hurt by his recent breakup with his long-term girlfriend, Jackie, who was supposed to be traveling with him while they worked their way around the world to Australia. We talked about the possibility of me taking her place and the logistics of trying to earn cash without a work visa. The next morning when we woke and cuddled, I informed him that I had been intimate with our co-worker the night before our night together. S. explained to me that M. was outright rude to him simply because his accent reminded M. of his ex-wife, and that this would likely cause problems at work, but I would have to decide between the two of them.
S. was talking about a future with me; M. only wanted to forget his past. That night, all three of us happened to be working at the restaurant. M. was very excited to see me – he was dressed up and wearing cologne and a huge smile. M. and S. took turns hanging out at my hostess station and flirting but keeping away from each other. I was torn. I still cringe from this, but I finally made up my mind and told M. that I had decided to date S. M. was hurt and angry, and he had every right to be – there was no way he could have known what I was up to the night after we had been together. I am still not convinced that I made the right decision and I wonder how different things would be now if I had gone the other way.
S. and I had our share of fun. One of my best memories with S. is that a co-worker offered to let us use her car to take a trip to a city two hours away from the island. S. insisted on driving first because he had made it a point to get an international driver’s license, but after a few scary turns into oncoming traffic, he pulled over and begged me to drive. We spent the day shopping in Traverse City and then headed back. The co-worker failed to tell me that her car was leaking transmission fluid. When I got to Mackinac Bridge, the fifth longest suspension bridge in the world, the car suddenly began to decelerate, despite me having the gas pedal to the floor. S. woke up in the passenger seat when cars began honking at me. He was yelling at me to stop slowing down, and I was yelling that I wasn’t doing it on purpose, something was wrong with the car. We made it across the bridge going 10 mph and ended up coasting into the first parking lot off of the bridge, which happened to be a hotel. We had missed the last ferry and so had to stay there for the night. S. did the best thing a boyfriend has ever done, which was go out and buy tampons for me at a convenience store because I was not prepared for my period to start that night. He also scored a pizza for our dinner.
S. and I dated until the very end of the season before the first snowflake fell. Instead of taking me with him across the globe, though, he broke up with me. He was still hoping to reconcile with Jackie and was convinced he would see her in Australia. I still remember the day he left. The main street was very quiet and it was an overcast, windy day. I was watching out my window onto the street because I knew which ferry he would be taking, and there he was walking his slouched-over British walk with his big travel bag on his shoulder, not looking anywhere but straight ahead. I wanted to yell goodbye to him but instead watched him as long as I could before he disappeared into the ferry while I cried big, fat tears.
Now that I am older and bed-bound, I lament the fact that I will never have the opportunity to choose between S. and M. again.
(Thank you to George Bernard Shaw for the title quote.)
Would You Like Some Mayo With That?
Today I made a trip out to a new neurologist with my mom’s friend as the getaway driver. He was recommended to me by my sister’s employee because he was a great help to her family member, who was also suffering from some mysterious neurological issues (but after only 10 minutes he figured it all out). I went in with my usual folder of about 100 pages of documentation. After chatting with him for about 45 minutes and getting a brief neuro evaluation, he determined I should go to the Mayo to be seen by numerous doctors so they could try to get to the bottom of it. Those were the magic words I was waiting for. I already have my hotel picked out down there! I found out after I booked the appointment that this particular neurologist was trained at the Mayo and he still has an “in,” so they can’t turn down his referral. So I stumped another doctor but it was not a pointless visit – I am finally getting my foot in the door.
I am relieved that this particular fight to be seen by some of the world’s leading experts on issues with CSF is finally over, but I’m already looking ahead – and I know that this is the last stop for me. If they can’t figure it out, there’s no where else for me to go. Also, maybe this time someone will write me up in JAMA and put their name on this condition. I’m tired of having to explain why I have placeholders for the disease names.
100 Dates
When I moved to Phoenix in 2003, I didn’t know anyone. Not a single person. I also didn’t have a place to live or a job, but thankfully I did have some money in savings, so those two things kinda took care of themselves. Creating a new circle of friends was a huge challenge, though. The first job I landed was as a traveling trainer; I flew to cities all over the U.S. to train loan officers and processors on the new software that was being implemented for a large mortgage company. This meant that sometimes I would only be in Phoenix for 20-48 hours total before I had to fly out again – long enough to do laundry and repack. I also didn’t know my way around Phoenix at all – this was long before cell phones were able to navigate and navigational systems were hugely expensive. I thought the perfect way to juggle all of this was to go on dates.
My reasoning was this: 1) I could meet a lot of people; 2) It would force me to learn the city; 3) I wouldn’t have to buy groceries that might spoil while I’m on the road. I used LavaLife to shop for men and make plans for when I’d be back in Phoenix. I booked breakfast, lunch and dinner dates. Occasionally – rarely – some of them got second dates.
One that did was Don Juan. He was a slick Mexican guy with a BMW, and turned out to be my introduction into the world of “Netflix and chill” before it was a thing. He was soft-spoken and had the appearance of a teddy bear. Make no mistake, though – he was dirty, dirty, dirty. But it got a little old being FWB, because I wanted to get out and actually do stuff in my new city. One of the few nights we were out I was driving and flashed my lights at a driver who forgot to turn his lights on, and Don Juan yelled at me, saying “Guera (pronounced “wetta”), don’t flash your lights! Are you trying to get us killed?? That’s a gang signal!” Most of the areas in Phoenix cleaned up a lot by the time I moved there, so I didn’t immediately see why he was so freaked out. However, from that point forward, I could always hear his voice in the back of my head when I reached for my lights to flash them at another unaware driver.
Another was Earl. I had a soft spot for Earl because he was a ginger, he had a deep voice and a sarcastic sense of humor. We only went out a few times because he was another one who told me I must be a big whore because I went on lots of dates. I get a little bucky when I am accused of something like that – what’s wrong with going on dates? I didn’t even hug most of them, much less share my bed. However, I did file away his occupation in my memory bank, because a year later I got him to make a job offer to a friend.
There was one week that I had three dates with three different guys from Minnesota. The first one was a hockey player from Minnesota. You’d think that we would have a lot to talk about because of some common interests…but NO. He was not a big talker. We found out on the date that we actually had a mutual acquaintance in Phoenix, but that conversation didn’t go far either. He asked how I knew her, I asked how he knew her, and that was that. He had pretty hair and pretty eyes, and I’m thinking he was used to skating by on his looks. Ha ha – SKATING! I didn’t even mean to make that funny.
The second guy from Minnesota invited me over to his place for dinner. However, dinner was really just “Netflix and chill” while his black lab threw himself enthusiastically into the pool in the back yard over and over. (His neighbor thought that HE was doing belly flops into the pool.) There was no dinner in the deal.
The third guy from Minnesota met up with me for a date that Saturday night. This one was a good one. We met in August of 2004. He was tall, handsome, had a deep voice and was very, very calm. We entered into an arrangement where we would meet up for a dinner on a Saturday night whenever we were both home (he traveled a lot for work too), so he became Mr. Saturday Night. Though it was not a traditional love match, we kept in touch for years and would meet up every once in a while because we were so comfortable with each other. Oh, and we dearly loved to laugh! We would laugh for hours. He told me that I would always have a special place in his heart, and I told him the same. I took him to an event without knowing it would be the last time I would see him, because if I had, I would have wished him well. Mr. Saturday Night decided to let go of his past relationship with an emotionally abusive alcoholic and open himself up again to finding love. There was no space for me because I was the transitional person. I will always be grateful to him for being accepting of me, twisted wigs and twisted humor and all, especially since I have encountered so many men who have not been able to live with what was hiding under the prosthetic. I know that he was successful in finding his match because he sent me a note on Facebook telling me he was taking her to Minnesota to meet his family; I took it to mean that he was closing the door forever.
I learned many things on these 100 dates:
- There are a lot of McRoads in Phoenix: McKellips, McClintock, McDowell, etc. Makes it difficult to navigate with only a paper, accordioned map.
- Being nervous adds no value. After going through so many first dates, it’s really tough to make me get stage fright.
- People from California tend to not be reliable because they make plans and break them if something better comes along or they are very late. Be prepared to hear about how great California is repeatedly.
- Internet dating is still blind dating. No one has screened the other person for you, though – you are on your own in that department. I’m not even certain that all of them were unmarried at that time even if they claimed it to be true.
- Guys who say over and over again that they are nice guys and complain about not getting any dates is a red flag; usually the guys that claim this don’t actually like women, but rather just see us as these things that can service them.
- “Netflix and chill” is appropriate after, say, four months together, but not four minutes or four hours. I still wanna go on real dates.
Yes, I Have a Type
I like men. Tall ones, short ones, fit ones, cute ones, nerd ones, “dad body” ones, I can find something to appreciate in many. However, there are certain things that make me stupid – panty-droppers, if you will. They are:
- Firemen. I mean, c’mon, this should be a no-brainer. Granted, some are cuter than others, but family and friends alike encourage this particular addiction by sending me photos and buying me calendars. Even my realtor sent me a picture from a property she was renting to five firemen in Tempe, AZ – one of the guys was posed naked on top of a bicycle out back at the pool, helmet on his head, cigarette in his mouth, and holding a rifle. He was quite fit. His leg very coyly covered up his frank and beans. It was my dream photo minus the rifle and the cigarette. He had it blown up to poster size, which made it easy for the realtor to capture and forward to me. Nearly every day someone posts a half-naked fireman (or if it’s my lucky day, fireMEN) on my Facebook wall. My best day was just a few days after I got Dumb and Angry to move out of the house, I had to call 911 to get help because I thought I had popped my shunt out of the little hole in my cranium, and I was in heaven because I had a house full of firemen. They were all running through my house telling me how much they loved it while a couple stayed with me to work me up, so as I was being wheeled out of the house, I told all of them that I was looking for a roommate. Pass that up? Not me! Of course, I was in crazy pain and had just taken a big dose of painkillers so I was high as a kite, so who knows what else I said to them. I’m pretty sure I didn’t try to stuff dollars down their pants.
- Tall men. My first two live-in boyfriends were 6’2″ and 6’3″, and a former boyfriend was 6’4″. I tried twice to make a date happen with a guy who was 6’6″ (he wussed out, had just gotten divorced and was too damaged to follow through), and I think the guy who told me I looked like his dead wife was at least 6’3″. What is it about the tall guys? I’m not sure. I mean, yeah, they can see the top of the fridge, but big deal. I think because I’ve never been considered small, I don’t feel like Godzilla around the tall guys, as in, “Me smash little puny men and snap their thighs like twigs!”
- Musicians. I’m talking real musicians, like the ones that can play seven instruments or don’t rely on electronic alterations like auto-tune. I’ve lived with two drummers who could also play other instruments. I think I would give my left pinkie finger to go out with Glen Hansard (at least until I figured out the hard way that he’s a nutter or something). I think this stems from playing a few instruments while in high school and teaching myself a little piano, because I understand what is needed in order to be really good. Kid Rock can kiss my fat ass, he’s as talent-less as they get.
What I miss the most is being able to flirt, especially when I encounter a guy who would normally be somewhere on this list. If I attempted to flirt, any reciprocation would be along the lines of, “Oh, look, the sick lady with the cane and the droopy face is trying to get some action!” I can’t walk down the street with confidence while simultaneously looking for strong biceps or shapely buns because I can’t see further than a few feet in front of myself. You could parade a tall, naked fireman playing a guitar in front of me and all I would be able to see are his toes. All of my good years are being wasted in this bed while a whole new dating pool churns in the world outside my door. It seems criminal.
The Sick and the Dating 