MaSs hysteria

Frank wrote a letter for my doctor to sign, to be submitted along with my application for low-income housing, and though such official letters tend to put my state of health in a stark light, it was eerie for me to acknowledge that everything listed off as a reason for my needing accessible housing was very pressing and disturbing: my being home-bound due to the stairs; my inability to use my wheelchair in the apartment, restricting me to my seat or the couch when unwell; my struggling to go between rooms, making it very difficult to warm myself food and leading me to no longer use the bedroom, which is at one end of the apartment.  This is my life?  I guess it is.  Who knew it was so . . . limited?  I suppose the internet keeps my from feeling more claustrophobic and isolated than I would otherwise feel.  But I certainly convinced myself I need better housing.

That said, I’m not exactly ready to join the mob in rioting America’s not rushing to promote an Italian doctor’s take of MS as not an autoimmune condition but a vascular condition caused by insufficient drainage of iron from the brain, the cure being a simple operation.  What?  Is the media, controlled by donations from the insurance industry and with my ignorant neurologist’s full support, keeping a cure from us?  How long have they known MS doesn’t involve the immune system?  And why are they pretending it does?  Sounds like a nation-wide conspiracy to me . . . or patients desperate for a cure looking to trust anyone who claims to offer it, however discordant the theory.  In fact, the more surprising the cause and simpler the cure, the better.

Right after Frank gets that housing letter signed by my neurologist, I’ll make sure he gets to the bottom of this vicious cover-up, even if he has to beat a confession out of someone.  The health care industry thought individuals with MS wouldn’t rise up to protest just because many of us can’t stand.  That’s what belligerent partners are for!  And until we figure out what they’re hiding, . . . many thanks to my doctor and the MS Center for 13 years of invaluable support and care.  xoxo

I don't get it. I never hide anything from them.

Amazing grace

This mighty two-legged dog, Faith, speaks for herself.  I don’t believe in faith in the religious sense, but effort doesn’t work as a name, does it?  How about Grace?  Yes, yes, I know, the dog already has a name and I can only guess the religious implications of her name don’t bother her, so I’ll shut up now.  Regardless, she’s amazing.

On repeat

I hear all the time that I’m doing the best I can under my situation, but is this really true?  Or would another person with exactly my obstacles still be able to work full-time and/or raise a couple kids and support herself without help from her family?

Humans often use downward social comparison to make themselves feel better (wow, I’m a success story all considered), but what if I’m not managing well, given my circumstances?  After all, we can’t all be doing better than average, strictly speaking.  In which course was this reinforced?  Statistics or social psychology?  Is there truth where these matters are concerned or do we simply readjust the standards of measurement to meet our personal psychological needs?  Is it valid to think, I may not be able to work but I bring joy to at least three people and I’m a good person with a sharp mind gosh-darn-it?

This came to mind because one of my brothers is planning to go to Phuket and Bali for New Year’s and I thought, what did I do wrong to be the poor one in the family?  Can I really say it wasn’t my choice because of my getting MS or was I headed this way regardless, because of my interest in psychology and writing and my fear of being simply a glorified beard?

Or am I thinking of this all wrong and should I be satisfied with making a lovely home, doing my best to make ends meet, and finding happiness each day?  Because I often am content, until I’m confronted with those who judge life solely on income, status, and reputation, which tends to knock nine years of hard-earned awareness from me and throw everything into question again.

I make such an effort not to repeat myself when telling stories because I dread hearing, “Yeah, you told me,” but I see that in some regards I’m repeating the same questions to myself and others again and again: Why am I here again?  What are the necessary and sufficient criteria for deserving to be alive?  What do people deserve, if anything?  I’ve come to reasonable answers, by my own standards of logic, but these answers must not be so very reasonable and error-proof if I consistently forget them or repeat the questions to myself.  Unless it happens that I have a very specific case of amnesia when it occurs this puzzle.  I can hold onto both explicit (episodic and semantic) and implicit memory, though my memory of these subdivisions isn’t as sharp as it was in college, but it seems I can’t keep a grasp on the basics of intuitively grasping what life is for.

I told someone who’s been helping me navigate support services that I thought of contacting my school to ask if they had any connections that might be of help.  I added, “Of course I’ll reassure them I intend to make [my high school] proud one day.”  She said in reply, “That’s the way to see it.”  But isn’t that not the way to see it?  I’d only made a bad joke because asking for help is so humbling, especially from institutions that have given me so much already, but does my struggling financially necessarily mean I have yet to prove myself as a graduate and individual?  Haven’t I shown my value in how I conduct my life?  How does my struggling financially make me less actualized?  I take back my self-denigration, damn it.  It depressed me to find she thought so little of what I’d done with myself.  Note to self: don’t expect anyone to disagree when you make little of yourself.

“I feel like a burden on everyone.”
“You’ve said that before.”

What was I supposed to say?

Frank had to walk the dogs, so I was the one appointed the task of calling a friend, Michael, whose beach home we plan to spend Christmas at and who called recently, saying he could add an extra day there with us.  Frank had already left a message about how this might be a problem, but his phone had lost M.’s return call, so I left another message on Michael’s voice mail, explaining the matter:

“Hi, Michael. I’m calling because Frank’s phone lost the message you left on it last night–I’m not even lying–it happened to him with about eight other messages last week.  So we weren’t able to hear the message you left, but wanted to explain that one of my brothers, the one in Vancouver, he’s in art school there, will be visiting for just a few days around Christmas, so we probably have to leave by Sunday . . .”

Frank takes the phone from me.  “Hi, Michael.  We’d love to go to your beach house for Christmas.  We just had something we’d planned with Yulia’s family on Sunday and we have to confirm when it is.  But we don’t want you to alter your plans because of us.  If you want to stay till Sunday, that’d be great.  We just have to confirm what Yulia’s family has planned for Sunday.  Thanks so much.”

Having ended the rambling call, Frank tells me, “Could you hear yourself talk to him?  It sounded like you were lying through your teeth.”

“But I wasn’t.  I was telling the truth.”

“That’s not the point.  You sounded like you were lying.  It was painful to listen to.  From the moment you said you weren’t lying about my losing his message.”

“That was true, too.  I just meant it could sound like a lie, your phone losing a message, like saying you don’t have your homework ’cause your dog ate it, when that never happens.”

“But everything you said after that just sounded like a lie because of that.  You made it sound like what I’d said before about getting together with your family was untrue.”

“You took the phone from me before I could explain fully.”

“But if you could hear yourself.”

“It’s not my fault if the truth sounded like a lie.”

“It does if the person thinks you’re lying . . .”

“That’s your issue, you realize.”

Frank debates this within himself.

“Okay, you’re right,” he says.

“It’s actually really funny when you think about it.  This must be why we still have trust issues.”

“I trust you.  I know you can’t lie.”

“So what’s the problem then?  I can’t tell the truth?”

“I don’t know.”

“Look, I didn’t know what day of the week Christmas was and what days we were going to be away or when Kon was going to be here, so I was confused.”

“I got that.  It just sounded awful.”

“Regardless, I was telling the truth.  I just didn’t know what the truth was.  And what you said sounded worse, since it made my family plans seem fake.”

TMI

While having sex, I tell Frank, “Amos Oz, he was one of the finalists for the bad sex [writing] award, can you believe he wrote that a guy reaching up a woman’s top thinks her breasts are like a 12-year-old’s?  Isn’t that pedophilic?  Not technically, but still it’s creepy.  You can say they’re fresh or perky, but comparing them to a 12-year-old’s is just wrong, not that people don’t think it, but . .  . eeks.”

“I hope he doesn’t have daughters.”

“I hope he doesn’t interact with humanity.”

Later on, I note, “I just can’t think of Tiger Woods as a sex symbol.  He is an athlete but golfers aren’t necessarily known to be fit, you know?  Think of Arnold Palmer.  Can you believe I remembered Arnold Palmer?  I haven’t thought of him in ages.  Okay, I’ll change the subject.  Anal?”

Unpresentable

I call my mom to give her an update on my housing search, warning her it may take years and asking her if she and my dad can be patient.

Subject settled, she says, “Change your Facebook photo.  You look sick.”

How did she see it?  I unfriended my dad months ago.

“I am sick.  I’m underweight.”

“No, it’s not that, it’s something else.”

“What then?”

“Your hair is down, it doesn’t look nice.”

“It’s fine.  A stranger complimented it on the street that day.”

“Really?”

“Yes.”

“But it looks clammy.”

“It was wet.”

“Ah, that explains it.  Change your photo.  It doesn’t look nice.”

“Why should I care?”

“You need your hair cut, make it just a bit longer than your shoulder.”

“That’s too short.  I like it longer.”

“Don’t go to your friend.  He charges $60.  It’s too expensive.”

“I don’t go to him anymore.  He was the lover of a friend of a friend.  But they all charge that.”

“I go to Chinatown.  It costs $25.”

“But it’s difficult to get there by Access-a-Ride. Besides, i only get my hair cut once a year.  It ends up being less.”

“You need it cut more often.  it doesn’t look good.”

“Ithink it looks fine.  Let’s not talk about my hair.”

“But you don’t look well.”

“I never said I was.”

What does she want from me?  False advertising?  Does she think I’m detracting potential suitors?  Who knew I was still available? . . . Wonder what she’d think of my blog photos.

In search of pain relief

Frank and I had a lovely time for his 44th birthday yesterday (though I’ve been mistakenly thinking of him as 44 all year, so has he).  We had a late start of course, but then neither of us can manage long days; ah, how endearing, we’re both prematurely geriatric!

We browsed the holiday booths beside Columbus Circle and found Bora, the guy whose hand-crafted jewelry Frank has gotten me for two years now.  Having never met him before, I greeted him, “You never answered my email a year ago.  I asked you to make me a ring!”  Hmm, I meant it as a sign we were devoted fans of his work.  Thankfully, my being in awe of everything and picking out two sets of earrings and a ring proved our loyalty.  We also watched as a nasty woman tried to bargain down a pendant priced at about $140 (but would be sold for well over $400 at a boutique on the Upper West Side) and earrings to just $100.  Frank and I were rooting him on not to accept her offer since she was so obnoxious.  “Look, I don’t even have $100 to spend. . . . There’s a guy next door whose necklace I can buy, but it’s not as nice as yours. . . . No, I have to buy two things.  I can’t just get her one piece.”  We were so relieved when he held his ground and turned down her offer of getting a 50% discount.  Artisans need to pay their rent, too, you know?  We congratulated him afterward for sticking to his guns: who did she think she was?  If you can’t spend $100, go elsewhere or choose something else.  I just wish Frank and I could have afforded either of the pieces she wanted and offered him more than full price right in front of her (I couldn’t see them from where I was, but Frank said they weren’t my taste, though in an ideal world we’d have given them to someone whose style they fit).  Still, it was nice to finally meet him and tell him how much I loved his craftsmanship and that he was right not to undersell himself.  He promised to return our email next time.

Though I felt guilty getting holiday presents on Frank’s birthday, I can’t say there was much there for guys.  Was there someone who could take away the last second from the Huskers-Longhorns game and give Nebraska its deserved win?  The more I think about that extra second put on the clock for Texas, argh, I just hate the bowl system.

After several other booths, where we managed to find something amazing for his nieces (we can only hope they think it’s as cool as much as we do), we headed to the Rosa Mexicano opposite Lincoln Center.

Shortly after we got our entrees, a man in his seventies was seated at the table next to us.  He asked what we were eating and we began a conversation on Tex Mex and he mentioned how he’d only tried it when visiting his wife’s family, so he was no expert, though it was always a treat.  Does his wife watch football? I asked, thinking of the Nebraska-Texas game.  “Ah, she’s passed away.”  I suddenly felt like I was in a William Trevor short story (“Cheating at Canasta”).  I imagined a future in which only one of us would be seated at the table, observing younger couples and contemplating their connecion. Did he think we would last until this fate?

When I asked the man how he’d come to choose this place finally and he spoke of living on 76th Street, I wondered, could he tell we were giving ourselves a treat and were actually very poor?  No, this is my own paranoia, I reminded myself.  I was wearing a necklace that made me feel lovely, a guilty and very early holiday treat to myself, since at the time I didn’t know if Frank would be able to afford to get me anything.  Thankfully, a referral from a past client has given him his first new client in perhaps a year.  But no, there were one or two others: he simply undercharged them due to the bad economy.  And that never put us ahead but kept us even.  What was more fortunate was that the day before his resume appointment, he’d had his first acupuncture session, my non-romantic but practical and heartfelt gift to him, and for the first time in nearly seven years, he was pain-free for a few hours (i think such a relief would bring me to tears after all the years of struggle) and his pain has somewhat muted spikes the next day.  His acupuncturist said ideally she’d be able to see him three times a week (she says the effect is cumulative), but hopefully his body will still remember to tally up the effects of sessions one week prior.  At the least we know it’s truly possible to free him of disability, if only for a time.  I wonder what I’d do if I had a few hours or a day of not having MS . . . I’d make sure I was in London or Paris when it happened, I’m pretty sure.  Or if we were still in New York, I’d be difficult to keep up with.

In middle school, classmates used to make fun of me for how quickly I walked, it seems so strange to think of now.  Maybe I knew time was running out.

But I’ve gone on a tangent.  What I meant to note was that the man became more solemn as the evening progressed and I worried he was disappointed in the food we’d praised so highly.  What could I say to make him smile?  What could I do to make him want to return to the restaurant and think his meal and evening a pleasure?  He joined in as the lovely waitress and I sang happy birthday to Frank, but he left before we did, not having dessert himself but thanking us both for our conversation.  I imagine he was preoccupied in remembering his late wife while witnessing Frank’s and my interaction with each other, but I’m not sure anything I could have said would ease such pain.

Celebrity becomes you

"Sam and Sidney" by Ernie Barnes

Overheard as Frank and I were going down Columbus Avenue, one man to another, in full seriousness, “This guy, he knew Andy Warhol before he was Andy Warhol.”  Makes you wonder . . . do those two go about the city all day, exchanging that same line so they can be quoted?  Who gets to say it next?

What we can’t ever know

To clarify why I’d decided to make public a post from a few days ago, I did so only after the circumstance that has inspired it had passed, so that it could not be interpreted as a cry for attention or sympathy but a mere description of my experiences and thoughts.  So it seemed acceptable to post such musings once the thought no longer struck me as a reasonable answer for the current situation, hence no longer something worthy of others’ concern.  Because I don’t respect those who cry wolf for others’ attention and sympathy.  It’s manipulative.  I’m of the philosophy that, if you speak of it, you better carry it out one day so you’re not just a whiner.

As for making something public which most would keep private, it’s because it matters to me that I am as I present myself.  As I explained to Philip, I’ve known for several years now that I would bring my own end, even with the help of therapy and medication.  It doesn’t scare me, only I get annoyed when events make those thoughts premature, as was the case this past week.

The key for me is to do what I can to think of something to live for and that usually postpones my plans.  It’s only unfortunate I have fewer things to live for now than even a few months ago.  I’m working on it, but with little success beyond the ever shortening list I had two years ago.  On the bright side, I still floss and use stim-u-dents every evening for my gums (as my periodontist instructs), which means I haven’t given up on myself. I’m simply the kind of person who is fascinated by these little aspects of life, hence my choosing to write about it.  This thought, in turn, made me realize I had another motivation to live, simply to be able to observe life, since as all sensible people know, death isn’t as it’s portrayed in The Lovely Bones.

I also realized recently that I can’t merely live to spare Frank (I no longer care what effect I have on my parents), since I can’t protect him from being hurt.  He has to save himself eventually, as I’ve been constantly exhorting him to, though I know my pointing this out is to no avail.  This is an odd dance Frank and I perform.  I do what I can to protect him, only to resent feeling I should protect him, but the pain of seeing him hurt makes me give in and make things better, only to know in myself that I won’t always be able to be there for him.

For those who may question why we continue this dance, it’s because he makes my life worth living.  We always laugh together, no matter how difficult things get, and he understands my sick humor (and its unhealthy roots); he doesn’t get tired of my overanalyzing things and answers my hypothetical questions based on the disturbing things people reveal about themselves on update feeds; he knows what twisted things repression leads people to do but also regrets that being open about who one is isn’t a panacea; he plucks my eyebrows and uses his prescribed pain-killing cream to make the process more bearable; he has the same instincts about people and language; and he makes me care about the Huskers and also made me believe people’s handwriting does in fact reveal aspects fo their personality, which I’d thought was a joke before.  (I’m socially awkward [left-leaning print] but I fight it [largeness of print showing desire to be understood], my writing sample says today.  My signature also doesn’t have the blunt [sharp-tempered] end it had a few days ago.  Bravo!)

On a very sad and serious note (which can’t be underscored enough), it’s the birthday of a former classmate who died just over a year ago from anorexia.  She’s often in my thoughts, when I think of my relationship with food and my body, when I think of parental expectations and the disparity between our friends’ and our own view of ourselves, when I think of what depressed individuals have to live for, when I imagine potentially living alone and able to lock out the world, when I think of how much I wish I’d known her and all the conversations I didn’t have with peers in school.

In the seventh grade, she was my Secret Santa, a great one actually, and she made me a mixed tape with songs I so appreciated her taking the time to introduce me to (I was very self-conscious about not knowing any popular music at that age).  The one song I remember in particular from the tape was Alphaville’s Forever Young.  It’s heartbreaking to hear now.  I’m not sure what message I would give if I could: It would have been wonderful to have known you better, but I’m so glad you had a tight group of friends to support you.  I wish you were still alive and battling through whatever challenges you faced, if that was a feasible option, but I’m glad you’re no longer sufering. Most of all, though such questions can never be answered, I hope you made the right decision for yourself.

Photo by Sherry Keller

Life goes on

Why do people slit their wrists and not slash their carotid artery?  Is it the difficulty of the matter?  The fact the wrist is more visible?  Is it because people who slit their wrists usually do it for attention and so don’t even slice in the right direction?  Of course, not having done so myself, I’m assuming the right direction is along the artery and not across it, but I may be wrong.  Wouldn’t slitting your throat be quicker?  It’d leave an awful scar if it didn’t work, true, but then there are always scarves and wearing your hair down.

One of my hypothetical questions that isn’t, of course.  Usually they’re funny, though, or at least Frank and I think they are.  But now that I think of it, this doesn’t even count as one at all, but is merely a simple if complex question.

Last night the thought of slitting my throat didn’t even scare me, as it usually does, or scare isn’t the right term; it’s usually just horrifying.  In fact, I’d never even considered it before as an option.  And the shower, with its new anti-scalding unit keeps the temperature at its hottest very regularly, which is inappropriately convenient.  But then I thought Frank would be home soon and such things need more time to be done completely and I’d probably want to supplement it with painkillers and sleeping meds and anti-depressants, though the thought of taking anti-depressants before doing such a thing is rather . . . paradoxical.  Fortunately, the thought terrifies me again, though it’s not so horrific as it is frightening.  I was always so bad at giving myself injections.  I can’t imagine slicing would be any easier, no matter what my mood.  Odd to even think of it as a mood.  Life goes on.

P.S. “Two American kids doin’ the best they can.” (John Mellencamp – Jack and Diane)