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.

 

 

 

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