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.

 

 

 

Advertisements

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.