The Perks of Not Being Able to Pull off Pastels

I'm currently quite isolated due to my illness and I'm thinking about past experiences with social seclusion that inadvertently prepared me for this.  When my mind is operational, I am never bored.  This is partially because, during my entire childhood and adolescence, I spent my summers on Nantucket where I had absolutely no friends. 

In the beginning it made sense I had no friends.  (I was socially awkward to the point of paralysis.) But, by middle school, I had actually developed social skills yet somehow my sense of humor didn't translate to the Nantucket crowd or, rather, the Nantucket Yacht Club crowd.  (I still couldn't pull off pastels.  I felt ridiculous in girlish prep attire and, well, it was a requirement.)  So, I learned how to occupy time with other things. I wrote horrible poetry, I wrote horrible stories, I put on one woman productions of my favorite musicals by myself which I performed.... to myself.  I learned how to play pop songs by blowing into an aperture I made with my hands, I became okay at the devils sticks and developed a bevy or other entirely useless skills.  I can actually make Nantucket lightship baskets... (To this day, if you gave me some cane, I could figure it out.)  At one point, I took up stunt kite flying.  I learned how to launch the kite by myself and, actually, I became somewhat adept.  Occasionally, I would fly my kite in a field outside my family's rental house and people would stop to admire my skills. Sometimes, we would engage in a short conversation about the kite.  Where did I purchase the kite?  Where did I learn how to fly it?  I told them about The Nantucket Kite Shop and the VHS stunt kite flying instructional video that came with the kite from The Nantucket Kite Shop; then they would go off on their way and leave me to the field.

That was usually my daily social interaction for the day.

I suppose I am actually happy about these summers I spent in social seclusion because it prepped me for my current isolation/disease. When my mind is operational, I am never bored. I do not fundamentally understand boredom. So thank you to all my former Nantucket peers who never liked me!

P.S. If you were friends with me in middle school, I believe I lied and said I had friends on Nantucket to create an illusion of a mysterious second life where I dated and engaged in illicit teenage activities. I think I also invented a pseudo boyfriend/love interest to deter anyone from thinking I was gay?  Anyway, this was all a lie to incease my social cache.  SORRY FRIENDS FROM MIDDLE SCHOOL. 

Disease-addled teleporting zebras

Note : I originally posted this on FB yet it remains the most honest explanation of my descent into illness so I'm reposting it here for posterity.

Over the past years I've posted messages about being chronically ill and it's fairly clear that I'm housebound and seriously sick; I've been this way since late February of 2014.   I'm currently diagnosed a constellation of ill understood disease processes: POTS, Ehlers Danlos Type 3, Mast Cell Activation, severe ME/Chronic Fatigue, chronic SIBO, severe endometriosis, etc... However, for years and years before I physically collapsed -- dating back to 2007 when I was initially diagnosed with ME/CFS by Jose Montoya -- I was slowly falling sick in a classic autoimmune fashion (it's fairly clear that some autoimmune process is driving this according to tests) but I was simultaneously blaming all my symptoms on off and on alcohol abuse issues and then .5 mgs of ativan. (Not to say I didn't have a substance abuse issue -- I did.) But for anyone who knew me during this period of time, they may be confused. And I feel the need to provide a long-winded explanation of my past explanations of periods of malaise&torpor, which were a mixture of exaggeration of my substance abuse issues, complete denial, and some truth.

When you have an enigmatic autoimmune disease, the truth is difficult to comprehend. The truth is like a disease-addled zebra that teleports in and out of your life until you really to believe you're off your rocker. Or, at least it was like that for me. "Did that month long bout of torpor and pain actually happen because -- well -- I'm sorta ok now?" I learned to distrust my most visceral instincts; that distrust of the corporeal does something to a person. I became divided. One part of my body was sick, another hated myself for thinking I was sick (my paranoid "nervous exhaustion" I thought to myself again and again), and another an interrogating detective. "Is your back really in agony or is this psychosomatic?" I disconnected from myself and examined my body from a detached third eye view -- trying to find the most believable explanation for my bouts of tachycardia, pain, and cognitive torpor. And there were easy culprits.

After my initial diagnosis of stage 4 endometriosis after surgery & then my diagnosis of ME/CFS in fall 2007, I had to take a quarter off from Stanford. After said quarter, I developed bad habits & I could blame symptoms on my off and on alcohol abuse (though that was not exactly new) and a .5 mg of prescribed ativan per day, which I believe rendered me an enormous addict even though doctors -- including addiction doctors -- told me, physically speaking, I was not. I lied about this to myself as much to others. At some point, I exaggerated my benzo usage in order to create a comprehensible truth that could explain the inexplicable symptoms and bouts of illness that repeatedly waylaid my life. To be fair, it wasn't really lying because I BELIEVED it; every other explanation wasn't comprehensible to me. I dismissed specialists who diagnosed me with POTS or ME/CFS because the vast majority of doctors dismissed them. It had to be completely my fault because if it was my fault, I had some level of control. There was something I could DO if it was my fault. I believed in the disabling effects of my bad habits so completely that, even when I had crippling pain, tachycardia and slurred speech after living like Mormon for months, I reasoned it was some weird withdrawal symptom that had just manifested -- a BELATED withdrawal symptom from a drug that doctors said I'd never been physically addicted to. I did in fact believe that. It was a religion. It was my explanation for everything.

That being said, I really was a periodic binge drinker during my twenties and this probably didn't help my health, especially when you add a dash of ativan. (It wasn't a daily affair but it was often quite out of hand....It got ugly.) Broadly speaking, when you're enigmatically sick and are often dismissed, being fucked up (an off and on binge drinker) and having unrelated health issues are not mutually exclusive. The generic doctor might believe them to be mutually exclusive but they are not. Beguiling and disabling symptoms that plague you drive self-doubt & self loathing and ultimately may help lead you to substances. That being said, my off and on binge drinking was a genetic inheritance and I probably would have drank too much during my twenties no matter what. But, had I not been sick, I'm fairly certain I would have been a functional substance abuser. I suppose that's not an excuse...

But yes, while I did talk constantly about my drinking problems and eventually the benzos, I never talked about the quarter I had to take off from Stanford senior year because I felt I could barely walk up the stairs. (Said bout of illness predated my benzo "addiction") I never talked about my Postural Orthostatic Tachycardia diagnosis in 2011 or other similarly not well understood diagnoses. I knew people would not take THAT seriously. When I felt sick & I was not engaging in bad habits, I did not discuss it because I knew it would be dismissed. My medical issues were too nebulous at that point -- pain, fatigue, torpor -- and, whenever I''d vaguely discussed them, I'd always been cast the hypochondriac. So I cast myself in that role as well. I didn't want to deal with the ridicule so I convinced myself that it was either all in my head or a result of substance abuse. I became so accustomed to dismissing my body that I dismissed it even when the problems became incredibly concrete and tangible. In the summer of 2013 I lost twenty lbs in under a month. I was in horrific back pain and had a slew of abnormal neurological exams. They thought cancer (rapid weight loss/back pain) and then MS (neuro exams) and after they tested for those & the usual suspects & came up with nothing, I reasoned that it was nothing. I mentioned it vaguely to my closest friends in NYC; they assumed I'd had some gastrointestinal bug....

In short, the truth behind my illness was not comprehensible or convincing and, when it was, I'd become so inured to my body's complaints that I ignored them. I reasoned that my body's problems probably had obvious causations. But sometimes the most likely suspects have nothing to do with anything. When I basically got rid of the bad habits and all the scapegoats, that's when diseased zebra teleported into my life again. And this time he was so fucking enormous that nobody could deny I was sick. And that's how far gone I had become in order to acknowledge the reality of my illness. Because of clouding diagnostic factors and bad habits coupled with crippling self doubt, I needed EVERYONE -- and I mean EVERYONE (I felt like death, I looked like death, my vitals were all over the place, my illness was extremely visible) to believe I was sick before I could believe it.... I needed everyone, not just rarefied specialists but quite literally everyone, to validate my illness before I could validate it myself.

And, ironically, I eventually had to get BACK ON the goddamn benzos for neurological problems. If I don't take them half of my face spasms violently amongst other things that I won't get into. The doctors demanded it...

All this being said, I dream every day that I'll be healthy enough for most people to question whether I'm really sick. That is my ultimate goal. Ramble over...

Note: my brother is the one person in my personal life who never dismissed me. He always said I'd developed serious health problems that I needed to acknowledge/explore & that substance abuse wasn't THE piece of the puzzle... I wish I had been able to hear that. Or I wish that I'd taken Dr. Montoya's diagnosis of ME/CFS in 2007 seriously or my diagnosis of POTS in 2011 seriously & not listened to the myriad of generic internists who said that my problem was simply my lifestyle & everything else was hogwash. I suppose I only have myself to blame in a way. But, there it is.

Christmases of Yore

I wrote this shortly after Christmas and right before I got a virus that somewhat took me out for the count.  It is no longer timely but I feel compelled to post.  Grave contrition.  This post is about spending Christmas on the GREAT PLAINS with my salt-of-the-earth midwestern family.......... 

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Since it was Christmas recently, I was thinking about Christmases of yore. One tends to think about events when they are happening or if they just happened.  For instance, if somebody is drilling a hole into one’s skull it’s almost impossible not to think about this fact.  (Some Christmases have indeed have felt like this.)  Or, on the opposite end of the spectrum, if you’re given a puppy who has been genetically modified to remain a puppy for life you might have puppies on the brain.  You may be thinking of puppy toys and puppy food and puppy outfits.  You may also be thinking about the ethical ramifications of genetic modification.  But, I digress.

In short, Christmas to me often feel like a morally ambiguous doctor forcibly yet slowly drilling a hole into my brain.  But, when I was younger, Christmas felt like receiving an ageless puppy, a puppy so happy and furry and full of hope that it transcended time.

I’ve been trying to recall such times, times when Christmases were not black tied catered events with a smattering of dysfunctional family fights in front of the cater waiters; times when a buyer from Wilkes Bashford didn’t sort out our Christmas gifts before the event.  It wasn’t always this way.  Until I was 11, we celebrated Christmas in Kansas at my matrilineal grandmother’s house.  These Christmases had an almost Norman Rockwell feel to them but, then again, maybe every Christmas has a bit of that tinge when you're a child. Christmas is such an earnest affair; it’s really only for the young.  And perhaps it's simply because I was young but Christmas in Kansas felt like a ageless puppy. 

Like any true children of California, my brother and I were amazed by snow.  We’d abortively attempt to go sledding in my Nana’s completely flat front yard until my father came to the rescue, building a structurally suspect ramp out of plywood.  He poured buckets of water on the ramp to ice it down so we’d go careening into the street at a high velocity.  Everything was so simple then...  

My brother and I would also while away the holiday time playing hallway football in the only hallway in my Nana's house. The rules of hallway football were fairly simple: one person would attempt to run to the other end of the hallway with a football and the other person would attempt to block them. Since my brother was 3 1/2 years my senior, I never particularly stood a chance.  My brother would immediately tackle me when I had possession. When he had possession, I'd catapault my body onto his back and start manically hitting him in order to thwart his forward momentum.  While my arms were clasped around his neck, I might try swinging my feet onto the wall and pushing off, sending bro and I careening into the opposite wall and hopefully inflicting enough damage to make him fall.   Sometimes it worked.  Sometimes it didn’t.  My brother in turn would try to prise me loose from his back by ramming me into the walls with a simple rotation of his torso. When I was smaller, he could usually dislodge me by simply ramming me once.  But, as I grew older, I developed a more vice-like grip.

Reading that paragraph back and it really didn't sound as folksy as I'd hoped it would.  It also seems that my competitive instincts as a six year old were perhaps unhealthy.  But, if I know anything about this country, it's that trying to fight my brother to death to prevent a touchdown in a hallway is as folksy and American as apple pie.

Anyway, from what I have heard, my brother and I WERE mostly adorable during the holidays in Kansas.  My Nana always liked reminding of us of our holiday present wrapping service.  “Matthew and Lisa’s Present Wrapping and Delivery Service Inc.!”  My brother would write bills on my late grandfather's typewriter and keep track of the accounts with his adding machine. In other words, he was the Meyer Lansky of the operation. I was the labor, the present wrapper and the delivery girl. Starting at about six years old till I was too old to fit on it, I'd take a tiny tricycle and ride around the one story ranch style house and ask my relatives for their orders. Then I'd go back to the office, wrap the presents, and tricycle back with an invoice. 

And yes, I concede my brother and I eventually got into fights about our company and the division of our profits.  Early on it was apparent that there was a gross injustice in that Matthew seemed to take all the profits.  By age 10 or so, I realized that Matthew only gave me 10% “Matthew and Lisa Present Wrapping Service Inc!” earnings.  I’d try to offset the imbalance by asking for tips.  But I was only tipped with M&Ms. 

I have a distinct memory of approaching my father -- in the way kids do during Christmas -- about the disparity between my earnings and my brother’s in our supposedly jointly held corporation.  This was when I was about ten I think...

“COMPETITION!” My father bellowed.

“What?” I said.

“Competition drives the marketplace Lisa.”

Then I think he slurred something about Adam Smith and The Wealth of Nations.  It was unclear and I'm fairly certain he was slightly drunk.  That being said, I think I got the general message. 

The next year I started my own rival present wrapping service and my brother and I constantly fought about stealing each other's "clients."  I'm fairly certain this rivalry for monetary gain was obnoxious at 11 and 14.  I know this because my father would say things like, "Could you guys please stop being obnoxious."  And yes, we did cause some trouble.  But, what middle schooler HASN'T had their adding machines, TI-85 calculators, invoices, and all other business accouterments confiscated because they nearly came to blows over who got the "contract" to wrap all of Nana's presents, which subsisted solely of socks, slippers, and rape whistles for the women in case of emergency.  Shrug

The other great thing about Kansas was the sense of family history.  Being in the home where my aunt and mother had grown up really gave me a sense of belonging.  In California, everything was sterile and new and sunny and un-christmaslike.  There were no old traditions or belongings or stories. 

In Kansas, well, there were definitely stories.  Some of these stories were cute, like how my Nana cut my mother's hair in the middle of the night because she thought her long locks had become too sexually enticing to the opposite sex.  You know, stories like that.   But then there were other stories....   You see, midwesterners are very polite and almost saccharine sweet in public but, when you get them in private, the skeletons in the closet come tumbling out until you are simply buried underneath a bunch of skeletons decorated with too much tinsel.  The transition from sweet polite self-conscious midwestern chit chattery to the buried family secrets was always an interesting one.  One time I was alone with my aunt and the following dialogue ensued.

Aunt: "Oh, we have to get your second cousin Steve pie."

Aunt: "You see, he likes pie."

Aunt: He's been an agoraphobe for thirty years, since his wife died of brain cancer, and pie is the one way I can get him to go outside."

Aunt: "He'll definitely get the pie right outside the doorstep.  That's not too far..  Sometimes I call him and tell him I'm leaving the pie by the mailbox because then I think he'll just have to come out of that house to get the pie by the mailbox." 

Aunt: (in a mumble)  But that's really just a waste of pie.

And, okay, maybe your aunt telling you that your second cousin once removed has stayed in his house for thirty years doesn’t really sound like a Charlie Brown Christmas moment. I’m also not sure why it never occurred to my Nana or Aunt to bake them a series of pies to lure Steve outside the house. Perhaps an apple pie on the door step, a cherry pie just outside the porch, a blueberry pie on the walkway, and finally something fantastic -- maybe key lime pie -- by the mailbox.  But they never did that.....

And then there were the stories about my grandfather.  My grandfather was a manic-depressive-chain-smoking alcoholic whose behavior was so scarring to his children that they in turn scarred their children by simply recounting said stories.   But the stories about my grandfather are a bonding experience for all of us; it ties the matrilineal line together.  He died young but his shadow looms over all of us, cold but yet still mysteriously warm to the touch.  "Did you hear about the time that he went manic and Nana called the cops to hospitalize him because he decided to invest all the family savings in a Greek restaurant."  "I heard the restaurant didn't actually exist?"  "It didn't, it was just one Greek guy!!!"  But this shared history of one extremely fucked up man is something that links my knits our family's heart parts together so, during Christmas, they all collectively thrum in love or amazement or sheer retrospective terror. :)

So yes, Christmases in Kansas felt like puppies...............  

Or like a chain-smoking, manic-depressive alcoholic who's always peering over your shoulder. 

You know what? 

I think it was both.  

I HOPE EVERYONE HAD A GOOD HOLIDAY!!!!!!!