On Love and Loss

“The Anatomy Bequest Program at the University of Minnesota is is a whole body donation program.” As my family found out on Tuesday night, it is also the largest in the world of its kind. http://www.med.umn.edu/research/anatomy-bequest-program

I have always grappled with organ donation – but only because I’m not able to, ever. I want to. But thanks to all of this autoimmune stuff swimming around in me, and my eyes being damaged from the pressure being placed on my brain from this mystery disease, there isn’t any part of me that is safe to transplant into another person. This anatomy bequest program seems like the next best option. I envision baffling some of the medical students with my weird disease – or maybe they open me up and immediately figure out what the problem was, and it was nothing that could have been detected with scans. My brain will be sliced and sectioned and labeled for its “A-ha” moment, and I’m perfectly fine with that.

I sat with my sister and her little family, and we knew our brother-in-law and another family member were somewhere in the audience. We were in an auditorium on the U of MN campus to watch a show put on by students and staff as a thank you to the family members of the people who had passed and donated their bodies at death. I knew it was going to be a tough night. I could feel the sadness rolling off of the people around me and I immediately started choking up. I had tears during the first performance, a pianist playing a Debussy piece. A little of the tension was relieved when it was announced that a trio was going to perform a Lynyrd Skynyrd song and an old hippie in the section next to me let out a gruff and enthusiastic “All right!”

The performers took a break and a slide show began. Each donor was being shown in pictures chosen by their spouses or families, with Joni Mitchell’s version of “Both Sides Now” playing. I knew our sister was going to be there on the screen very early on alphabetically and the tears came again. After her time in front of the crowd, I just closed my eyes for a while. People around me were sobbing quietly. I have no idea how recent their loss was, but it really doesn’t matter, because we were all there for the same reason. We loved our people.

The performances continued after the slides made it through the L’s; one poetry reader encouraged us to hold hands with the people next to us while she read her poem about hands. I could feel my older sister and I freeze at the same time, uncomfortable with the suggestion. I leaned over to my sister and whispered, “I’m good.” We weren’t the hand-holding types.

After more performances, the slides continued with the rest of the donors. I’m not sure when it started, but as each picture was displayed, these little groups of people would clap when their person was shown. Some whooped a little; one woman yelled out, “We love you, mom!” There was more sniffling and sobbing, more tears. My sister and I were surprised to see a former classmate’s picture at one point – she had died only about 2.5 months prior from breast cancer. I imagined that her parents were somewhere in the mass of people, also proud and incredibly sad.

It turns out that our brother-in-law was just in the next section and so after the auditorium started emptying, he came over to us. He has always been a jokester, so it was especially heartbreaking to see him openly crying. He apologized when he hugged me, which is what we all do when we think we have to hide our pain. He is the one I worry about the most. He is now alone in his big house, a home that has so much of our sister still in it. She had MS and was confined to a wheelchair for most of their marriage, and the house was modified to accommodate a wheelchair and scooter. He cared for her, turned her, carried her when she needed help getting to the bathroom. They were each others’ best friends. He couldn’t even take much time off from work to mourn her because he had used up all of his allotted time to make sure she was comfortable in her last two months while cancer took over.

I know our brother-in-law mourns deeply. I am having a hard time finishing this post because the grief keeps crashing into me in waves, and I have no doubt that he feels it more than any of us. My singular wish for him is that he will be able to find someone to love again when the time is right. I don’t like the idea of him holding onto the memory of our sister for the rest of his life and turning away from another great love, and I don’t think that is what she would want for him either.

I am grateful to the U of MN for having this program that allowed us to come together and celebrate the giving and joyful heart of our oldest sister.

Advertisements

Put Some Warrior In You

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.)

Poor Little Bird II: The Saga Continues

On my profile page on Fetlife, I specify that I am going through a health crisis and I can’t play in any way. I meant this to indicate that I can’t date, go to parties, go to dinners, Skype, sext, or email, because to me, all of those forms of communicating leave the door open to “playing,” even if it’s just writing a few paragraphs. It still requires effort and imagination. I still have to please the other person and try to fulfill their expectations.

This morning I woke up to an email from a guy who had cancer for decades, acknowledging that he is aware that I’m experiencing major health issues right now and explaining his personal experience being sick. Then he says that while I’m sick, we could still sext and get to know each other, and when I’m well we could meet and play.

I’m not quite sure how to process this one. On one hand, it’s still the idea of, “Oh, look, you have a broken wing. I’ll just fuck the other wing, k?” But since this is coming from someone who has been sick for all of his life minus one year, I know that he will understand what I’m dealing with. I also understand that he’s eager to jump into the dating pool because this is the first time he’ll be able to screw around cancer-free. He probably has a lot of catching up to do – as opposed to me, as I seem to have experimented more than your average bird in the decades leading up to this illness, so I don’t feel like I have been missing out.

Another factor that needs to be considered when sexting or emailing someone without meeting them first is that when you finally do meet, sometimes it kills your boner for the other person. I’m thinking about one date in particular where we became very sexually intimate over messenger, but when we met for a date, I immediately wished that I could take it all back, there was so little attraction to him. I feel like such an old lady now when I tell someone that I’m not interested in sexting. It’s simply not true – I love it – but now I think it would be best to limit it to men I actually know and want to jump, and only then if they can hold a conversation with me above and beyond “Show me your boobs.”

You Look Just Like My Dead Wife

In 2012, I was doing relatively well. Abdominal pains that plagued me for 8 months suddenly became a lot less frequent, and the shunt seemed to be doing its job, so I was actually able to work out and lose weight.

I got a message from a friend, S., telling me that she met a guy who seemed to be right up my alley. I’ll nickname him Take a Hike. He was widowed with two kids, had a foul mouth, and seemed to have the same sense of humor as me, so she suggested that we meet. We texted and talked and set up our first date, which included his two young children; I certainly didn’t mind if he didn’t. Take a Hike was a good friend of a female friend of S., Eye Cabbage, who had been in a relationship with another woman for 16 years, so I knew that he would be open-minded about my friends and beliefs.

We seemed to get along fairly well and I loved his kids. We’d see each other a few times a week, sometimes including the kids and sometimes not. We were having lots of dirty, dirty sex, the kind that my mother should never know about. Take a Hike would always tell me to trust him and to get out of my head while poking me between the eyes, because I would tense up and tend to over-analyze certain things that were bothering me in general life, which would lead to less successful romps. He very much appreciated my hard work on the working out as he was always telling me I had a beautiful body.

There were some things I found out later, like the deceased wife had the same name as my oldest sister and our first date was on the first anniversary of her death. I was a little upset that he didn’t tell me about it being the anniversary. I mean, we could have made it ANY day, it didn’t have to be that day.

After about three to four months of dating and being in constant contact, I went away to Europe for a few weeks because I had promised my friends I would come back to see them if I was well enough. We had tried to work it out so that Take a Hike could come with me for at least a week while the kids stayed with his in-laws, but couldn’t find a viable solution, so he stayed home and instead asked me for souvenirs. I emailed him regularly and relayed my adventures.

When I returned from Europe, everything changed. He was not returning my calls or emails. I conspired with S. and Eye Cabbage to meet up with him at a restaurant they were going to, just to try to talk to him face-to-face. He and I took the kids back to his house, put them to bed, we banged, and he told me he would be better about staying in touch – it was just that I looked so much like his deceased wife with my green eyes and bald head (which he had never seen)/red wig that he was starting to feel weird about dating me. When I left to go home, we kissed and made out, and his Newfoundland dog tried to tackle me to the ground like she always did – nothing was different.

But again, after that night, he wouldn’t answer my emails, calls or texts. I felt absolutely rotten about my appearance; it was nothing I could help, but obviously he didn’t want any reminders.

I really despise chasing a man down and begging him to treat me like I matter. I finally said “Fuck it” and wrote him off.

Not long after – maybe a week or two – I found out that he decided to shack up with Eye Cabbage. The lesbian friend. The woman who had been with her woman for 16 years. I was their “cover” while she worked out her plan to leave her girlfriend. I felt like the biggest kind of idiot – for being used, for being duped, for trusting ANYONE. They could have done all of this without him sticking his dick in me. She acted like she was concerned and wanted to help us connect, but really, I was just helping to propel her plan.

As far as I’m concerned, Take a Hike and Eye Cabbage deserve each other.

P.S. to Eye Cabbage: Be prepared to be the bread winner for the rest of your life. That lazy slug has never had a job and never will. Ha ha.

Can Men and Women Really Be Friends?

Recently, I had to cut off a friendship with a man I have known for 10 years. I did it very deliberately and specifically told him why we could no longer be friends – as opposed to other methods such as always appearing to be too busy, or never answering calls/messages.

At the beginning of this month my sister passed away, and ten days later, a friend passed as well, both from cancer. Both were young, and their cancer took over their bodies very quickly. I felt as if I had been crying non-stop since I moved to Minnesota. So when this friend, Clueless, texted me about taking care of destroying old, useless MRI films for me, I told him what happened. This is how he responded:

“How old was he? How did he die?”

Now, let me rewind a little bit and tell you that I had told him when my sister was sick that it was imperative that I move back to MN as quickly as possible so I could say goodbye to her. His response was, “Well, WHEN is she going to die?” Up to that point he had been calling me to complain that he didn’t have any friends, and the people he had considered himself close to – me included – were all leaving the state and he wasn’t going to have anyone left. So when he started quizzing me about the friend who passed, I ended each short answer with, “Why?” After the second time I responded with “Why?”, he told me he felt as if I was fishing for condolences.

Fishing for condolences.

He told me that he was justified in demanding that I defend why these deaths affected me.

Let me go back even further to February 20, 2013. That was the day I had my third brain surgery (I’ve had 10 at the present date), and I was lying in my hospital bed, in horrible pain as the anesthesia was wearing off. I got a call from Clueless. He wasn’t calling to see how I was doing; instead, in his most whiny voice, he said, “This is day one without Nasty, it’s your job to keep me from calling her.” Nasty was his ex-girlfriend, whom he wasn’t currently seeing, who ended up giving a cable guy a BJ like she was living out a porn scene, and Clueless found out about it. Nasty was a very mousy woman with glasses and braces who called in sick at least twice a week at her workplace because she didn’t feel like going to work. The only reason Clueless was so attached to her was that she is a swallower. They had nothing in common, fought constantly, and she didn’t understand any of his cultural references because she was at least a decade younger than him. That day in the hospital I tried to follow his rantings, but he got pissed off when I dozed off, and hung up on me telling me that he was going to call back the next day and quiz me about what he said. And he certainly made good that promise.

Let me go back even further. In 2005, I joined an online socializing group. We would sign up to events listed on a calendar, hosted by other members of the group. It was a great way to meet new people and try new things. I hosted a few events myself including a dinner night at an Ethiopian restaurant. Cluless joined the group at around the same time. At the events, we would often gravitate towards each other, always laughing and sharing stories. We ended up dating. Now, the length of the dating varies according to whom you ask; we lasted about six months, but Clueless says it was only one month because the rest of the time he was trying to find someone better to date. He also had a list of 42 qualities he was looking for in a mate. I met all but two because at the time I had already lost all of my hair and so didn’t meet his minimum requirement of shoulder-length hair, and my bachelor’s degree came much later. At the time we were dating he wasn’t working and he was getting his food from the food bank, but was still convinced that he should buy an investment property. Clueless would often tell me that he was different from everyone else – he really, really didn’t want to work, and he wanted all of his income to be passive income. No, really. So when he told me he was going to have his mortgage broker cook the numbers so he could qualify to buy another property, we got into it. (By the way, #3 on his list was to have a girlfriend who would NEVER question and always tell him he was doing the right thing.) During the fight he told me I obviously didn’t know what I was talking about because I had never owned a home. It didn’t matter to him that I had already been in real estate for 12 years at that point; he had just gotten his real estate license six months prior, and that outweighed any experience I had. I told him that the crazy prices in the market weren’t going to last and that he shouldn’t count on a house becoming instant income, and he obviously couldn’t handle taking on another mortgage. (Incidentally, six months later the market crashed and his properties were sold at 1/3 of their high values. He is still kicking himself 9 years later.)

Anyway, it got ugly. We didn’t talk for a year and a half. When he contacted me again, it was to tell me that he didn’t know why we broke up. I reminded him. He said it wouldn’t have worked out anyway because it always weirded him out that I don’t have hair. Lemme just tell you that he’s a few inches shorter than me, is losing his hair, and doesn’t care for his teeth, so his rotting mouth smells like moth balls. He’s completely obsessed with appearances and it kills him that other men are taller than him, and he has spent thousands of dollars on hair products. He doesn’t see the merit in making an effort with his teeth.

Since reconnecting, Clueless and I have kept in touch and even had times where we could comfortably be friends. We’ve shared birthdays, movie nights and game nights. We did not, however, resume dating. I couldn’t view him the same after knowing that he respected me so little.

Besides the phone call I got on that day of surgery and his jerky attitude with my most recent losses, there have been other times that he has not acted in a caring manner. For example, whenever he wanted to socialize, he would insist I drive 60 miles round trip to his house, because he could not handle driving from his workplace to my house, which were only 2 miles apart, and for all but 8 months in the last 5 years I haven’t been able to drive more than 2 miles or be upright for more than 30 minutes, if at all. In other words, if I couldn’t get myself to his suburb, he wouldn’t waste his time with me. Also, during one of our conversations in the last year, he told me that women do not age well, only men, his mother included.

So when I told him that I was no longer interested in being friends, he became very defensive, telling me that he was a much better friend than me because he would always reach out to me (and say incredibly shitty things!). I blocked his email, phone and Facebook accounts.

It doesn’t help his case that after I left Phoenix he invited himself to my friend’s house under the guise that he was sad that I left and he ended up trying to force himself upon her so that she had to push him off of her and kick him out of the house. He was mad. I was tempted to bring that up when i was telling him to fuck off, but why drag her into it? He thinks he has some magic micro penis that is going to put girls under a spell if he just waives it around.

Maybe the problem isn’t whether men and women can be friends, but rather what kinds of patterns of behavior do we fall into because of our history. When I think about what I enjoy out of any friendship, it’s sharing adventures and quality time together, and there’s give and take, plus a fair amount of respect for both parties towards the other. Ultimately I have decided at this point, Clueless can kiss my fat ass.

Goodbye, My Almost Lover

In 2013, I was kind of limping through the year. I had surgeries on February 20th, May 20th and May 26th, and by the time I flew back to Minnesota to attend a high school reunion and help my parents with organizing their house, my shunt had already formed a huge bubble in my back when it cracked after only being implanted for a month. I had just seen my neurosurgeon the day before flying out and he had given me the okay to leave Arizona because besides the large collection of CSF under my skin, I seemed to still be functioning.

What is really different about the school that I graduated from is that the majority of us lived on campus in a dorm, much like college. Only juniors and seniors attended, so the people in my graduating class were together for two years, and the class before us and after us were around for half of our tenure there. The advent of Facebook was really a boon in our attempts to stay connected with our classmates; we came from all over the state of Minnesota to attend the “Fame school” and basically felt largely that we were the rejects of our old schools because we were more intense about our art areas than most – and let’s face it, just different in general. So when one classmate organized yearly picnics for the students who graduated between 1991 and 1995 (just so there would be some overlap), we all knew that if we made the effort, there was a pretty good chance that we’d see some good friends.

I took up the task of being the event photographer. If you ever feel guilty about sitting around on your duff at a gathering, it’s a great excuse to talk to every single person who attends.

This one guy, Hot Dog (and you’d laugh if you knew his real nickname!), was in attendance. He was always in my peripheral group of friends, since he was a year younger and dated one of my classmates. He was wild. Or maybe it would be more accurate to say that he had a wild mouth. He always looked a little wild, with flyaway frizzy hair, cherub cheeks and tree trunk arms, but his cutting wit was dangerous. I always thought of him as being an obnoxious younger brother while we were in school. If there was a way to make jokes about dead babies and grandmothers, he’d be the one to do it. And it was never at a quiet volume. Never.

True to form, while I was visiting with Hot Dog at a picnic table with a couple of other friends, he lifted a cheek and let out a fart. He did another one when I whipped out my camera, saying, “I was just blowing Brad a kiss.”

Only two days later, when I was back at my parents’ house, my shunt went into total failure and I lost most of my vision. I had to fly back to Phoenix to be operated on again by my neurosurgeon because the neurosurgeons at the Mayo in Rochester turned me down – they didn’t understand my symptoms, so they didn’t want to work on me. Any plans to socialize were impossible.

But after that reunion, Hot Dog stayed in touch with me. I’m not sure if I sent him a message first, or if he initiated contact, but we commiserated over our mutual disgust for my most recent ex-boyfriend (Angry and Stupid? Dumb and Angry? I will have to look back at what I nicknamed him initially.), because we were all classmates together. He actually married (and subsequently divorced) the classmate that he dated through his time at the arts high school; they were together about 13 years before she found Jesus, and I think they were as close to being soul mates as anyone could hope.

After a few months, our messages became more intense. He was always supportive of what I was going through with my brain stuff and tried to understand as much as anyone could who had never had a chronic condition himself. We had some discussions about my difficulty as a bald woman finding any men who were okay with my hair loss. It was immediately easier for me to open up to him because for him, my lack of hair never diminished my femininity in his eyes. Then I found out that some of my kinks were the same as his – not an easy feat, as anyone in the kink world knows. I’m not saying that I am anywhere as unusual as the guy who thought it was hot to have his jaw stomped on and teeth knocked out, but there are certainly more than 50 shades of dirty out there. We had many steamy sessions of sharing our wants and urges. He also talked about how good it felt to start working out again, getting back into the karate he had picked up as a boy, sweating and kicking and punching and trading fat for muscle. We discussed the possibility of coordinating a road trip for him to come down to Arizona.

And then he got sick.

At first he was joking that his intestines exploded. At least, that’s what it felt like to him. But as it turns out, after his doctor insisted multiple times that he suspected the atypical presentation was actually cancer, and his body flying apart was caused by stage III colorectal cancer. He had to go through multiple rounds of chemo to try to keep the cancer that had spread to other parts of his body under control before one big surgery was performed to cut it out. At the same time that he was going through that, I had already had four more surgeries and was waiting on another one, and was in excruciating pain for 10 months because of a leak that could not be fixed until we figured out what I was allergic to. Rather than talking about what we wanted to do to each other, our talks shifted to his fears about never having full functionality or a decent quality of life ever again.

The surgery was extensive. He had a bowel resection and they removed his rectum completely, sentencing him to a colostomy bag for the rest of his life. The surgery was not as bad as it could have been – the doctors had no idea what to plan for, everything would only become apparent after opening him – but it was certainly bad enough.

We traded more messages, but there were a few times when it sounded like he might try to reconcile with his ex-wife. Around the same time, Ping Pong came in for his final round, so I let Hot Dog know that I would no longer be able to talk dirty as we had been, but I didn’t want to lose touch. Our talks were never the same and we went radio silent fairly quickly.

Around the end of March of 2015, I saw an article about a guy who was modeling with his colostomy bag, and I sent it to Hot Dog letting him know that I was thinking of him and hoping that he was getting stronger. I didn’t receive a response. At the end of April, when I figured out that I would have to move back to Minnesota, I sent him another note letting him know I was landing very close to him. Again, there was no response. At that point I figured that he really didn’t want much to do with me after I went back to the ex and he tried to move on.

But then he died.

It was actually just two days ago. I found out because like every other morning, I started by opening my laptop and catching up on the news. That was the first thing that came up on my Facebook. It was like being punched in the stomach. From what I’ve been able to gather, they succeeded in removing all of the cancer, but the surgery was so invasive that the aftereffects were eroding his life on a grand scale. For a short amount of time he allowed pictures to be posted of some events he attended and it seemed he had taken up residence at his favorite coffee shop to sketch, but he did not update Facebook himself.

I was not the only one who was shocked by the news, but towards the end, he kept only his most loyal people close to him. I understand. I came in late and left early. But I still wish we could have had a conversation, and maybe some laughs, all better face-to-face rather than 1600 miles away, before the option was forever off the table.

On Friday we will all have to say goodbye to Hot Dog. He was so many things to so many people, but to me, he was my biggest regret. I didn’t see the diamond that was camouflaged by all of the shit jokes.