This has been a tough seven days. Last week was the 19th anniversary of my father passing away; two days later it would have been his birthday. It also would have been my sister’s birthday; we lost her in July the week after I moved to Minnesota. My father’s brother is losing his battle with stage IV throat cancer. And I got my fifth rejection letter from the Mayo, supposedly the #1 neurology/neurosurgery center in the U.S., saying they don’t think they could come up with a name for my disease or a prognosis or a treatment plan.
Like with most major obstacles, I had myself a good cry, and then I called my family and gave them the update on my denied referral. I waited until I had a conversation with my disability attorney; that did not go well either because he seems to think that there is no way I can win my case if there isn’t a name for my disease. Yet his website repeats over and over that when our cases go to court, we should focus on the symptoms and how our quality of life is affected, not the name of the disease.
I have friends all over the U.S. and in locations around Europe, so it’s sometimes easier for me to get the word out on Facebook. I feel a little silly “liking” everyone’s message of support because it feels like I’m fishing for sympathy. However, it’s also nice to know that some of my friends are outraged on my behalf and willing to write/call/tweet in order to call attention to my plight. A few people have stepped forward to say that they have media contacts, so I’m widening my reach with giving them documentation to pass along to their people. The theory is that if the doctors won’t take me, maybe the news will?? My medical coverage is through medical assistance in Minnesota so I would not have any expenses covered if I went to a different state. However, Johns Hopkins has a “remote second opinion” option (for a minimum of $550) and they will review my case without me having to fly to Maryland. I may end up doing this. However, I do not think it’s very effective because it’s one thing to read about my symptoms, and quite another to actually see my issues in person. I have taken to scaring my friends by moving the fluid around in my brain so that my face stops being paralyzed momentarily – aka my “party trick.”
I’m a very social person by nature and being stuck in bed all day and night is really wearing on me and definitely changing my outlook and attitude. Last Friday night I caved and reopened my OKCupid account after a four-year hiatus. I barely had time to update the city when I started receiving messages – I was fresh meat! Generally speaking I don’t reply to obvious copied and pasted notes who claim they like me (without knowing me), but they just restate what they have written in their profiles. I also don’t like to talk to anyone who can’t write a sentence. I know it’s a huge reach to think that I can find anyone willing to just chat and not go on dates, but I have been up front with everyone who has contacted me to let them know that I can’t go out anytime soon. Dare I say I’m lonely??? It feels so whiny to say that. Yet here I am.
I talked to about three of the 20 guys for more than a few messages – most guys were either put off by my request for no penis pictures or my warning that I can’t actually go out. One was far, far too young for me and located a good hour away, but gets kudos for truly creative questions. One was obviously a social recluse and did not do anything outside of his janitorial job, which is really a bit sad. That one would send me messages saying he was lonely and bored and he wanted to come over. I get a serial killer vibe, though, or he’s just not capable of conversation, which is just as bad. He would kill me with social ineptness. I have asked probing questions and he only answers with “yes,” “no,” “ok” and “oh.” I suggested that he check out Meetup because he would never have to spend another night alone and bored if he didn’t want to, and that way it doesn’t solely fall on my shoulders to entertain him. I have enough going on. The third guy was really, really responsive, funny, age-appropriate and not put off by the fact that my bed is getting a lot of my action. I’m actually hoping to meet that one very soon.
The last time I went on a date through OKCupid, it was with a tall, southern gentleman who was ex-military about four years ago – I’ll call him Mr. Army. Mr. Army met me out at one of my favorite restaurants in the Phoenix area. It started out nice enough, though I could tell immediately that he was used to dominating all conversations. I would describe him as being a perpetual mansplainer. Mr. Army was too old to have served in Iraq this second time around, but he made it clear that he had very strong feelings about being over there. I’m a tree hugger and liberal at heart and his very vocal support of George W. Bush and Cheney made my skin crawl.
Towards the end of the meal I explained to Mr. Army that my friend had moved to the U.S. from Iraq twelve years prior to that to marry a man through an arranged marriage, and that she was currently trying to sponsor her parents, brother and sister and their spouses for asylum because they were still stuck in Iraq. Her brother had even been shot in the leg during a failed kidnapping attempt; people in his community knew he had a sister in the U.S., and the kidnappers were hoping to extort money from her. Mr. Army became outraged and asked me, “How do you know that your friend isn’t part of Saddam Hussein’s family? How can you trust her? She has no right to be here!” I told him it was obvious she did not come from some super secret bloodline; she would not sponsor them and put her name on all of the documents if that were the case. She was not being “kept” by anyone through a super secret account. It was an insane exchange. I am not very good at keeping a poker face either.
As I was walking to my car, Mr. Army stopped me to say he wanted to go out with me again. I declined. Did he not see my face??? I’m not certain what we would have fought about on the next date, but I’m betting it would have been about guns or religion. He who squeezes his eyes shut and yells the loudest wins, right? No thanks. I’d rather have a no pride night and sit on the couch for four hours in my pajamas, sprinkle chocolate chips in a jar of peanut butter and eat it while watching “The Notebook.” If Mr. Army is the alternative to that, I’ll gladly stay home.