Initiation to Rare Disease – Not My Own

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

HIM:  you are sooooooooooooooo wrong about everything

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

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

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

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

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

best wishes and will talk to you soon

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

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

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

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

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

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

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

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

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

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

 

 

 

WWJD

Drummer #2 coulda been Jesus. He grew out his hair to his lower back, dark brown with tight natural curls, and had light grey-blue eyes. He even had a full beard and mustache. The overall effect was Jesus, at least the Anglican version of that religious figure. Funny thing is that he was raised Jewish and was basically an atheist. Drummer #2 grew up in Manhattan in a lower middle class family that was ruled by his father’s violence and his mother’s indifference.

We met when I accepted an invitation from a guy I didn’t know well to join a group of people I didn’t know at all to hang out at a dive bar and sing karaoke and talk politics. Jeff worked at GoDaddy and he had rounded up some co-workers for a night out, and Drummer #2 was there. The joint’s decor was sad vinyl chairs from the ’70s and even sadder regular drunks sitting in a circle around the bar and staring vacantly into their drinks. I have never really shied away from meeting new people and hearing their stories – I mean, how else are you supposed to make friends as an adult? So we had some great conversations going around the table, but then Jeff had too many drinks and became a little belligerent. I was explaining to him some of the volunteer work I had been doing (being a “hugger” at a children’s hospital), and I was a little baffled to find that I had to defend myself to him when he wondered why I thought my work was benefiting anyone. Drummer #2 jumped in and that as difficult as it was to see very sick children, I was doing a great thing in comforting them. That immediately endeared him to me. In the parking lot, he gave me his business card and told me that he would like to stay in touch and his website was the easiest way to contact him.

I don’t remember how or where our next outing was, but we ended up spending a lot of time together, at least a couple of times a week. I had vowed to remain celibate for a year when I met him, so I did not see it as a dating opportunity. We would look for new and unusual (and inexpensive) things to do. I took him to the Paper Heart in downtown Phoenix, which is no longer in operation, but it was a multi-purpose art space for performances and poetry jams and live painting. It turned out that he was a photographer as well as a musician and I knew that that place would be right up his alley. For a one-month stretch I had a wild hair to go play some bingo – but not at a casino – so I tried to find places where we could hang out in a church basement with a bunch of blue hairs. All of the events calendars were outdated so we would end up driving up and down these streets where bingo should have been, and eventually we’d give up and go to a restaurant instead.

We carried on as friends for an entire year. Eventually I trusted him enough to talk to him about an idea I had for photographs, which was to paint my face, bald head and neck in white, and then make swirls on one side of my face with gold paint, quite like a Klimt piece of art. I went to a costume shop and found some really great face paints and we invested in an airbrush for the base coat. The photographs turned out better than I could have ever hoped. Some were black and whites, where my torso and shoulders were wrapped in white gauze, and that combined with the white paint and black backdrop made me appear as if I were a marble statue. Another was a full body shot of me wrapped in a quilt sewn with intricately printed fabrics where the gold swirls on my face contrasted with the white base paint, and the overall effect was stunning. We laughed over the fact that at times when I tried to look serious and intense, it really came off as a resting bitch face.

My lease with the current roommate was ending, and Drummer #2 and I decided to become roommates. We wanted to look for a house we could comfortably share that would have enough room for him to do his photography, and we settled on a 3BR/2BA on a little man-made lake, complete with ducks. We even acquired a paddle boat from his best friend. I had the bedroom at the front of the house next to the garage, and he had the master suite with enough room to shove his bed into a corner and set the rest up with black backdrops for his sessions. The middle bedroom was our office where we set up dueling computers. He was often working on editing his most recent photos or moderating a heavy metal website.

Not long after we moved in, we were laying on his bed talking about our days, and he raised up over me on one elbow and leaned down and kissed me. This is one of those times where ignoring my instincts resulted in dire consequences. I loved him as a person who was a large part of my daily living, and he seemed to accept me as I was, even with my quirks and less-than-conventional appearance. But I had all kinds of warnings going off in my brain and I wasn’t sure why. I fought them. I told myself I was being stupid. So at Drummer #2’s insistence that he wanted to be close to me, intimately, I broke my self-imposed celibacy.

Drummer #2 insisted that he wanted to show his affection for me by being intimate, but he absolutely did not want to get into a romantic relationship. I couldn’t reconcile that in my head; we were friends, and we were lovers, and we were living in a house together. Why couldn’t it be a romantic relationship?

I found out the hard way that I should have trusted the warning bells. As soon as he stuck his dick in me, everything changed. I became a possession to control. He didn’t want to be in a relationship with me, but he certainly didn’t want me to find anyone else. He also became incredibly critical of me and tried to control every emotion that I felt. Drummer #2 claimed that he was really “in tune” with me and could sense my thoughts and feelings. There were so many times I would come home from work and it hadn’t been a particularly good or bad day, but he would insist that there was something bothering me and that I should tell him everything. He wanted me to have bad days. Sometimes I would just make up stupid shit to get him off my case, like, “Oh, yeah, you’re right, this thing happened at work today.” Then he would make a big show of comforting me, as if he was the only person on the earth who could help me.

I was starting to feel really smothered. Every look on my face was scrutinized, and he was constantly telling me what I should be feeling instead. The only way I can describe that feeling is like he had is arm constantly over my shoulders, and I couldn’t shrug him off.

The co-habitation started in September of 2008. In February of 2009, I went to an event that involved group meditation. I had had many bouts of bronchitis for the prior 12 months and was fighting another round at that time, but I really wanted to get out of the house and find some peace. I got home and found him waiting on the couch with the TV and computers turned off. He was furious that I was gone for two hours, even though he knew I was going and where I would be, and he started raging. I don’t normally just sit back and accept someone screaming at me; I yell right back. It was a long, drawn out fight that lasted for four days.

We had opposite schedules and would sometimes leave notes for each other by using dry erase markers on our tile counter tops. On the fourth day I awoke to find all of the counters in the kitchen covered in black dry erase marker, telling me how horrible I was and that he had wasted his time with me by doing all of the fun things we did like try to find bingo and take photos. That was about 46 sq. ft. of counter space covered with tiny black letters. He told me that if I would just allow him to guide me that I would become a better person. He told me no one would accept me or love me like he did. At that point I was emotionally exhausted and hurt, and I apologized to him for yelling. But after that first big fight, there was always tension.

In March of 2009 I went on a date with a guy from work. That triggered another drawn-out fight, and more hate messages on the counter tiles. Drummer #2 claimed that he wanted to be in a relationship with me and that I was cheating on him by going out with someone else. It was news to me, but I agreed to stay exclusive with him. Again, I apologized.

There were so many fights and so many hate messages written on the tiles. He would also send me emails whose word counts were in the thousands. To this day I have a folder dedicated to him and all of the correspondence is in that folder, but I can’t bring myself to read it, so I can’t give you any specifics, but the fights always ended with him insisting that I should feel what he told me to feel and if I would just let him guide me, everything would be okay.

In June of 2009 we had another fight. That time, though, something sent him over the edge. I can’t remember what exactly – I probably raised my voice back at him – and he threw a drinking glass across the room at me. I do remember him calling me a fucking piece of shit, a bitch, a whore, yelling that I had made him try to kill me. I had been cooking something on the stove and there were thousands of pieces of glass all around me and in the food. The glass had ended up breaking the wooden blinds at the window next to me. I didn’t say anything but went straight to my room and locked my door. I called my friend and made arrangements to move into the empty third floor of her house, and I hired shitty movers off of Craigslist who broke every piece of furniture they moved.

That wasn’t the end of it, though. It rarely is in an abusive relationship.

It took three months, but he worked on me and wore me down until I agreed to go back to him and try again. At first he cried and tried to make his eyes as big as possible (a trick he admitted later as one of his go-to moves for manipulation), and then he started back in on telling me that if I would just feel what he told me to, everything would be okay. The fighting was constant. I remember curling up into a ball and sobbing because he told me I was worthless and that he should just leave me, and it was my fault that he was falling apart again after never intending to get into another romantic relationship in the first place.

Still, I tried. I constantly walked on egg shells around him, afraid that if I showed the “wrong” emotion, he’d freak out. We even tried to celebrate the holidays. I bought Christmas gifts for him based on what he had mentioned in casual conversation as wanting, and I jokingly told him to try not to buy anything for himself for a few weeks because it might be in my stash for him. He responded by saying, “What kind of piece of shit person do you have to be to tell me what I can buy?”

We didn’t make it to Christmas, though. I can’t remember what prompted me to leave besides the obvious, so maybe I was at the end of my rope. I emailed him and told him I would be at the house on Saturday, December 12th to get the remainder of my dishes from the kitchen and other odds and ends, but I didn’t want him there and I made that very clear. He was supposed to be working the early shift that day and should not have been there when I arrived.

When I let myself into the house carrying a brand new monitor still in its box that he had given to me, the house was silent, and I didn’t see his car. I took off my shoes and walked toward the back to the office to return the monitor. The rooms were dark and I didn’t see him in the corner of the office until I set the box down and I saw movement from the corner of my eye. He had called in sick to work and had been waiting for me. I ran through the kitchen towards the front of the house and had to pause to try to slip my toes into my shoes while opening the front door. He caught up with me there. He hugged his arms around me so that I couldn’t move without dragging him and I couldn’t raise my arms – and he also knew enough to not put too much pressure on one area to leave bruises, like grabbing me with fingers. We struggled at the door and he repeated over and over, “Don’t leave!” I finally managed to get mostly free of him and then I tried to get to my car, but he was pulling on anything he could get his hands on, mostly clothing. I got my flip phone out and managed to dial 911 but then hung up immediately when we continued to struggle in the driveway. The operator called me back and I was completely panicked and shaking, and I told her that he wouldn’t let go of me. When he realized I was on the phone with 911 he let go of me and allowed me to close the door. I started the car and tore out of the driveway, the operator asking if I could get to a safe place and wait for officers.

When the officers arrived (one male, one female), they questioned me. I couldn’t show them any bruises because I knew he hadn’t left any. When they went to the house to question Drummer #2, he gave them the big eyes and worked himself up to force his eyes to water. They came back to me and said since there weren’t any witnesses (this was too early in the morning for people to be out in the neighborhood) and he didn’t leave any marks, they weren’t going to haul him in AND if I called in another report, they were going to arrest me. I was absolutely dumbfounded. This is the stuff you read about but can’t imagine happening until it actually does. I started shaking and sobbing, and they told me to call a friend if I wanted to whine to someone.

After crying in my car for a while, I drove back to my friend’s house. A few hours later I received a call from Drummer #2 wanting to know what I wanted to do. I told him to get the fuck out of the house and stay gone for two hours. He told me he could stay and help. I told him I never wanted him to be there while I got the rest of my stuff and I never wanted to have any contact with him again. That was the last conversation we had.

Drummer #2 always bragged that he was smarter than everyone else, that his IQ tested off the charts and that he could get away with anything he wanted to because all cops and lawyers were stupid – and he proved it when I called 911. In 2010 I lived in two different apartment complexes. Every night of that year, I woke up in the middle of the night in a cold sweat because I was afraid he had somehow tracked me down and broke in and was standing over me, waiting for me to wake up.