The One Thing You Can't See

Songs have been lodging themselves in my brain for the past several months--deeply and insistently, as if they are clues that might help me solve some cold case murder.  Sometimes it's something I heard that day and other times the song bubbles up from some deep swamp of audio subconscious.  The latter is what greeted me as I surfaced from sleep today.  Vanessa Williams' "Save The Best for Last" is a song I haven't heard in decades, although in 1992 it was hard to get away from, which, at the time, was fine by me because it was my very favorite song. 

I remember going on a field trip to the zoo with my fourth grade class and listening to some soft rock radio station on my Walkman near the mountain goats, just hoping for the song to come on.  When it did, I watched the goats with a bit more contemplative melancholy as my heart soared and ached with the bittersweet mystery of love.  I don't know what struck such a deep chord in my 12-year-old heart when I heard this song.  The lyrics certainly didn't resonate with anything I had yet come close to experiencing.  In a nutshell, the song is about a woman who is friends with a man she loves and she remains by the man's side in a friendship capacity as the man goes through doomed relationship after doomed relationship without realizing that his female friend is actually his soulmate.  It finally dawns on him and the two get together. In hindsight "It's not the way I hoped or how I planned, but somehow it's enough" sounds like a pretty pathetic, or at the very least, underwhelming way to describe achieving true love.  Which isn't to say the lyric is unrealistic. 

The song made me feel exceedingly grown-up; it possessed secrets of what was to come in adult relationships and I filed all the details away so I'd be emotionally prepared.  In fourth grade after hearing this song it seemed a foregone conclusion that I'd someday meet a boy who would be perfect for me, but he'd be blind to that fact, and so of course I'd have to patiently and agonizingly wait until he came to his senses and recognized that I was his dream girl.  Knowing this exact inevitable scenario was looming just a decade or so ahead lent me an air of wistful forbearance.  And it made me feel mature and wise beyond my years to relate so deeply to a sentiment which I believed pervaded the adult experience.  In this one small, crucial regard I was right on the money.  A great deal of adulthood is about negotiating the unexpected sting of nostalgia while navigating the not-so rosy-hued rigors of grown-up reality.  There's still magic and joy to be had, but it doesn't look or feel anything like you imagined it would.  And this can be difficult to reconcile.

In any case, this song had a special place in my silly heart.  And while I traipsed about playfully in my dramatic, imagined world of unrequited love that gave way to soulmates, I was still basically a kid who was full of excitement and hope about pretty much everything.  At that time I was also fresh off the exhilarating high of playing The Magic Mirror in a summer school enrichment program production of Snow White.  It wasn't the leading role, but I had pretty significant stage time and I felt I had really knocked my performance out of the park.  So when a teacher suggested to my mom that I pursue drama at a children's theater in the big city (well, Milwaukee), I jumped at it.  I don't recall the name of the musical I was auditioning for, but I distinctly remember browsing the aisles of a local music shop for sheet music.  I was responsible for choosing a song to perform and bringing the corresponding sheet music to the audition.  When I came across "Save the Best for Last" it was a no-brainer.  My main concern was that the pianist might struggle to play such a difficult song. 

As it turned out, that was not the problem.  The problem was that I had selected a ridiculously long and dramatic song that my 12-year-old voice was in no position to execute and that my 12-year-oldness in general had no business trying to sell.  The pianist raised her eyebrow when I handed her the music, but she played the piece flawlessly.  I thought I did a decent job, and had I not stuck around to watch the other auditions I might have left secure in that belief.  But the girl who followed me was extraordinary.  When it was announced that she'd be singing "Tomorrow" from "Annie" I remember thinking, "What a boring and obvious choice."  Then I watched her put on a ball cap and sit backwards on a chair in a way that just screamed "sass" and "confidence" as she belted out the tune in a way that put that original little orphan to shame.  I understood I didn't have an ounce of the offhand charisma that these other kids did, much less their formidable pipes.  I left the audition hoping that my sophisticated song choice would help me get a call-back.  It did not.  But I remember the kind and amused gleam in the director's eye when we briefly spoke after my song, and I believe he thoroughly enjoyed the quaver of emotion in my voice and wince of pain in my eyes as I did my best impression of an adult who'd finally found love after years of turmoil and neglect.

"Isn't the world a crazy place?" Indeed, Vanessa Williams. 

Although the song is the epitome of maudlin, I think she made a solid point with: "Sometimes the very thing you're looking for is the one thing you can't see."

I see now that I was just a sweet kid who had a lot to learn about myself and the world, and who had no idea that my litany of foibles and fumbles would in time add up to the adult I am today-- an adult who still has a lot to learn, but who has quite a few amusing stories to share about how I came to be me. 

      

Mysterious Ways

I've been extremely leery of writing about the following because I prefer to have some degree of distance from things before I tackle them.  It allows me perspective, or the illusion of perspective.  It allows me to fancy myself wiser for having had the experience.  I get to humorously self-deprecate past folly, while acknowledging with gratitude that it has ultimately gifted me some sort of deeper understanding and clarity.  But for a variety of reasons that may or may not be true, I feel I don't have the luxury of time.  I also don't necessarily believe that time will provide me with insights deeper than what I've cobbled together so far.

While this piece is already annoyingly vague, I feel it needs further disclaimer before I get down to it.  I have a limited readership, but for those who read what I write regularly and for anyone who stumbles upon this particular blog entry I feel the need to declare the following:

I don't want to hear religious warnings or objections to what I'm about to write.
I'm not advocating for or soliciting anything.
I don't want to provide any "service" for free, even.
I don't want to hear from staunch atheists or scientists claiming there is a reasonable explanation for what I've experienced.
I don't want to be accused of making things up.

That being said, some or all of the following is bound to happen.  So be it.  Here we go.

A couple of  years back at my old apartment some strange things began to happen.  They began to happen shortly after I had an hours-long late night conversation with one of my best friends about almost everything.  One of the topics that was broached was my tentative longing to have an experience with a ghost-- one that was of the friendly, reassuring variety.  I thought such an experience might help alleviate some of my fear and grief over death that I carried day in and day out in a compact knot in the pit of my stomach.  Sometimes the knot would detonate and spray unimaginable darkness throughout my being, like the ink of a provoked squid.  Other times it would shrink to the size of a dime, so that, had it been in my pocket instead of my stomach, I might have tossed it good-naturedly into a wishing well so it could be surrounded with other coins that gleamed with easy hope.  Its manifestations varied in size and intensity, but its presence was constant.

A few days after this harmless little musing, our apartment thermostat began to creep up exactly 10 degrees, from a reasonable 70 to an oppressive 80.  It happened many times.  We tried to figure out how and why it was happening.  It was a twist knob in an out-of-the way location, not easy to be turned (and precisely 10 degrees) by brushing past it.  And for it to suddenly begin happening repeatedly after years without issue seemed doubly strange.  We spoke to our landlord about having our locks changed, and we were assured that they had been changed right after the previous tenant had moved out.  We scratched our heads and felt a general sense of being weirded out.  I told a friend about the experience and she said with confidence, "It's a ghost."  Thus began the process of learning about my friend's clairvoyant proclivities and of having her come over to do a reading.  My skepticism turned to anxious amazement as I watched her crystal pendulum come to life.  She'd get a feeling and ask a question;  the pendulum would swing forward and back to answer in the affirmative and side-to-side to answer no.  The wide, swooping circles also seemed to indicate an enthusiastic "yes" of some kind.  I was as fascinated as I was terrified.  I also asked my friend to facilitate conversations between me and some deceased relatives.  The experience made me cry with disbelief and joy.  They're still here, or there, or at least somewhere!

My friend ultimately determined the presence in my apartment to be a ghost of the kind and helpful variety who was trying to fulfill my request for confirmation of an "other side".  There are plenty more stories and details from this time, but I don't wish do delve into those.  Partially, it's because I find it speculative and a little tiresome to rehash something I still don't understand.  Partially it's because some of it was frightening and I don't want to dwell on that portion: like the time that Dion and I were out and my mom was watching Casper at the apartment and she called to tell us that the kitchen light had just loudly switched itself off and the Christmas lights had all begun to flash wildly.  My friend intuited the incident to be an old friend of my mom's who was so excited to see her that she got carried away trying to say hello.  Perhaps.  Who knows?

During this turbulent, invigorating, bewildering time I did crazy or totally reasonable things, depending on who you ask, like burning sage to flush out bad energy and having an elderly Buddhist nun come to bless the place.  But to the best of my ability I tried to compartmentalize things.  I stuffed the unknowable spiritual stuff in a box and put a lid on it and slid it into a dusty alcove in my brain; then I went about the business of caring for my new little baby and trying not to be overwhelmed with questions and curiosity and fear over the enormity of this otherworldly development.  I did so-so.  Dion was on the road for nights at a time and I was a new mom with rampaging post-partum hormones and a writer's imagination, so some days were better than others.  We more or less closed that chapter when we moved into our current home.

My reprieve was pretty brief.  While I now believe that much of the insomnia and anxiety stuff that began happening is due to the colloid cyst in my brain, at the time I had no leads, no explanation.  At one point a friend suggested I try Reiki to help release any stuck, negative energy.  I had always been wildly skeptical, about (a few times outright mocking) this particular alternative therapy technique, but I decided to give it a shot in an effort to get a handle on my life and mental health.  The Reiki practitioner I saw was patient and sweet and deeply kind.  She spoke to me at length about the treatment, answering all my questions before we began.  As I lay on the massage table feeling her hands hovering over me or gently making contact I definitely felt something, but that something was mainly discomfort.  There was no relaxation or gentle euphoria or glorious sense of release.  At one point it felt like something softly zinged open on the crown of my head, but the sensation was very subtle.  After the session I felt better, more open-hearted, less fearful.  And it seemed like the world took instant  notice.  Humans began inundating me with smiles and kind words or by confiding sad and deeply personal things to me.  To some extent I've always experienced this, but now it was as if the floodgates had been opened. There was a constant rush of people, mostly strangers, turning to me for comfort or speaking to me as if we were long time friends who needed to catch up.  I tried my best to take this all in stride, but it was quite overwhelming.

Not long after this began I visited a favorite bookstore on the Eastside of Milwaukee with one of my best friends.  I bought an armload of books, a decorative owl, a coin purse that said "Mo Money Mo Problems, and to my surprise, a necklace.  I've never really worn jewelry; it's just not my thing.  But this necklace called to me.  The pendant was oblong with a bubble of glass over these sketches of three trees drawn over unreadable text.  If held at just the right angle you could make out someof the words--"moon", "meow", & "music" being a few.  I loved it and I had my friend help me put it on as soon as we got back to my house.  A few minutes later I anxiously asked her to help me remove it.  I was feeling tugs on the pendant--not just one or two, but maybe a dozen, and they felt urgent.  I put the necklace in a drawer and tried not to think about it for several days.  But one day when I had a rare morning to myself, I fished out the necklace to see if I might be able to get it to move the way my friend had.  I recalled the way she held it and tried to do it the same way.  I carefully chose a deceased loved one to speak to and when I asked if she was there the necklace sprang to life, moving in expansive ovals.  There's a fine line between ecstasy and terror, I came to learn.  A finer line between interest and obsession.  I repeatedly tripped over these lines as I strove to understand this ability, or if it could be termed as such, this gift.  The way I came to construct and understand all of this in my head was as big-hearted as it was naïve, as generous as it was intrusive.  I came to believe that one of my new purposes in life was to comfort and reassure those who had lost their loved ones that they are still here in some real and observable way.  I began writing lists of family and friends who I felt were haunted by devastating losses and planned ways I could meet with them to perform this awesome testimony to their continued existence on some other plane.  Luckily I went through with precious few of these, and the people who witnessed my pendulum swinging independent of any manipulation on my end, were interested and appreciative, but certainly not weak at the knees with gratitude or awe.

I think my excitement over this ability was understandable and that my plan to bring comfort to others was adorable & well-intentioned.  But as I've come to learn, I don't really know what I'm doing or what this is.  I know that the bulk of the experiences I've had with the pendulum have been comforting and I like to believe that I've made real contact with my great grandmas and grandpas and aunts and uncles and cousins who have passed.  But I can't really know for sure what any of this means.  And it's more than a little presumptuous of me to think that other people want or need this in their life to help them heal or move on or find hope.  And I'm certainly a less-than-perfect vessel for this type of mediumship, if that's what this is.  I haven't attained grace or enlightenment or serenity through this.  I'm only slightly less scared of death than I've always been.  But all things being equal, I think this ability is one I'd rather have than not.  I think I'd like the option, even if I choose not to use it.  On one particularly devastating day when my health problems and this ability-with-no-roadmap converged in a place of exasperation and anger in my heart, I took my pendulum down to Lake Michigan on a sleety night and dramatically threw it into the frigid waters.  There, I thought.  Let's just be here and focus on what's right in front of me, on what's human and important: my Casper, my Dion, my parents and brother and grandmas and friends.  My LIFE.  The other side can wait, I breathed with conviction.

Then after the CT scan revealed the cyst in my head I went scrambling for some sort of necklace I must have lying around somewhere.  When it began rocking "yes" or "hello" or "still here" or "You're an idiot" or whatever it was trying to say I wept with confusion and relief.

All the old religions are rife with mystery and miracles, and if we are honest, faith is pretty much rooted in what amounts to the supernatural.  I'm not sure why something that is ancient and spiritual is automatically imbued with reverent faith, but something that is modern and spiritual is dismissed as bullshit, but I don't understand a lot of things, up to and including everything I just wrote about.

I've heard so many people mouth the words, "God works in mysterious way" in any combination of hushed reverent murmurs and smug I'm-in-a-special-God-club taunts.  In either case, my reply is: Understatement.




 

I Starred in a Real Life Lifetime Movie!

Sophomore year at UW-Parkside began with all the excitement and revelry that the previous year had lacked.  I  moved out of the cramped dorm room I had shared with a girl who was nice, but too straight-laced for my desired, under 21 college experience, and into a university apartment with 3 friends who were fun, debaucherous, and a devoted maker of very bad choices, respectively.  There would be 3 wild cards placed in our 7-person residence.  But how bad could they be? 

Well, they ran the gamut, as humans do.  One roommate was one of the most wonderful people I'd ever met and we became good friends.  One was as flat and unmemorable as a diner pancake.  And one was the most disturbed individual I've ever had the misfortune of crossing paths with.  College living went from drinking beer and watching the Daily Show to some heinous Lifetime Movie where the villainess seemed so over-the top evil you had a hard time suspending disbelief.  And it all began so innocently.

One night I awoke around 2 a.m. with an urgent need to pee.  One of my roommates was in the shower, which wasn't so odd as we were taking full advantage of our independence through binge drinking and adopting ludicrous sleep/wake schedules.  Without a second's thought I shuffled over to the bathroom on the other side of the apartment.  It was meant for the 3 roommates who resided on that side, but we weren't dictatorial about it.  If a bathroom was in use a roommate was welcome to pee in the one that was open.  Or at least that was the understanding that six of the seven roommates had.  When I finished peeing and washing my hands, Unstable One, poked her head out of her bedroom and hissed, "Why are you using our bathroom?!"  I explained the situation and with a suspicious look in her eye she ducked back into the dark of her room.  I shrugged it off and went back to bed. 

The following day the phone on our side of the apartment rang, and it was a call for Unstable One.  We had 2 landlines, one on each side of the apartment, so we had to share and be respectful of our phone time.  Unstable One had taken to using the internet in her room which used a dial-up connection and rendered their phone line unusable while she was online.  So she gave out our phone number to her one friend (who also happened to be her cousin) and we would deliver our cordless phone to her so that she could talk and browse the web at the same time.  Unstable One seemed heedless of common courtesy or of taking advantage of people's kindness, so it had surprised me when she seemed so ruffled by my quick potty break in a bathroom she shared with 2 other people.  In any case, I was the one who delivered the cordless phone to her that day, which is when I noticed the sign taped to her bathroom door.  She had used her computer to make a big stop sign image and typed below: "Unless your name is (here she listed her name and the names of the 2 other girls on that side of the apartment) you may not use this bathroom."  My jaw quite literally dropped. 

I talked to my friends and roommates about it.  They found it to be insane and somewhat hilarious and pretty hypocritical, considering her blatantly rude daily usage of our phone.  I talked to the other two girls who lived on that side of the apartment.  They told me they had nothing to do with the sign and didn't care at all if I ever used their bathroom.  While I suppose I should have talked the issue out with Unstable One, I decided to go a different route-- one that was somewhat immature, but extremely hilarious, in my opinion.  I didn't go so far as to design a fancy sign on the computer; I settled for torn notebook paper and a marker with my big, blocky handwriting that read:
"HALT! Unless your name is (I listed each roommate but Unstable One) You May Not Use This Microwave!!!" 

The microwave was my contribution to our communal living.  Unstable One used it liberally and I had no problem with it, until she made her strange bathroom sign.  Actually I had no problem with her using it after posting the sign; I just wanted to call attention to her ridiculous decree via an equally ridiculous decree.  I thought the sign would make a point and bring some levity to a ridiculous situation.  Instead, it set off a series of events so terrifying and deranged I still struggle to believe a human reacted this way. 

One night Unstable One had the apartment to herself.  I was working the late shift at the campus library and everyone else was out as well.  When I returned home Unstable One and her cousin were the only ones there.  They were in our bathroom, although there was clearly no one using theirs.  They were giggling hysterically.  When I asked what they were doing they giggled something unintelligible and left the apartment. 

Over the next several hours and days my roommates and I learned they had been tampering with as much of our stuff as they could get into.  And not in a "harmless prank" sort of way.  It was in a "very real potential to maim you, make you violently ill, or kill you" sort of way.  We all ended up throwing out combined hundreds of dollars worth of toiletries and food.  The only things we kept were canned goods, I believe, and even those felt suspect.  Of all the things I learned that Unstable One did, I'm sure there are countless more I'll never know about.  And maybe that's for the best.  But here is a list of things she and her cousin did that fateful night:

*Put dirty kitty litter in my cereal box (I ate a couple bites before I detected something was wrong)
*Put bleach in a roommate's contact lens case (she flushed her eye out and managed to keep her vision)
*Put Nair in a roommate's conditioner (she smelled it before using it, luckily)
*Emptied my brand new asthma inhaler (there were no puncture marks, so she literally pumped it 60 plus times to make sure I wouldn't have it available during an attack)
*Used all of our toothbrushes to scrub the toilet (we tossed them before using them, thankfully)

We filed police reports and had countless meetings to get her removed from our residence.  It was "our word against hers".  As if this were some very colorful conspiracy to alienate an innocent.  As if we were the bullies, the psychopaths.  She filed appeal after appeal and managed to stay in our apartment until the end of the year.  Meanwhile we kept all of our belongings locked in our individual rooms, taking them out long enough to use them and then immediately putting them back under lock and key.  All of us were equal parts terrified of this lunatic under our roof and furious with the university for not taking reasonable steps to remove her.

There were two times when I guess I "took the high road", times when I could have struck back and hurt Unstable One.  Once was when she had left for class, but forgot her keys on the kitchen table.  There were at least a dozen keys on that chain--the apartment, car keys etc.  At the very least it would have been a pain in the ass to replace them all.  My friend urged me to let her throw them in the dumpster.  I was tempted, but refused.  When Unstable One knocked sheepishly on the door 15 minutes later, I let her in.  Her eyes widened in surprise when she saw her keys sitting where she had left them.  Clearly that wouldn't have been her move had she been in my place.  She actually said, "Thank-you" to me for not fucking with her property. 

The other time was something my roommates and I joked and fantasized about all of the time.  After my facetious microwave sign was posted, Unstable One wasted no time in procuring her own microwave.  It was the largest microwave I've ever seen, almost a refrigerator.  It was sleek, spaceship-y silver and had dozens of buttons for any possible entrée you might wish to heat.  We dubbed it "The Millennium Microwave".  One of my friends and roommates wanted more than anything to snip the power cord with a pair of scissors on the very last day of school.  While that felt like some mild sort of justice, I couldn't let her go through with it. 

In both of these situations, I wasn't being noble; I was practicing self and group preservation.  I had no idea what Unstable One was capable of.  If posting a silly note poked her hornet's nest to this degree I didn't want to see what something malicious would provoke her to do.  I honestly believed she was capable of murder.  So she stayed to the bitter end, with her keys and gargantuan microwave in tact.

That summer I became extremely ill.  I had to take the following semester off to recover.  It took approximately a zillion tests, including a lymph node biopsy to rule out Lymphoma, to determine that I had Epstein Barr, CMV, and latent Tuberculosis.  My friend, who visited me at UW-Parkside every weekend, also got sick, even sicker than I.  She developed lesions on her brain and nearly died.  She was in ICU for months and had to relearn her motor skills.  Unstable one was supposedly a Microbiology major, although not much that came out of her mouth was truthful.  Still, I have no idea what she had access to and what she put in our food and toiletries.  I have no idea what my friends and I were exposed to.  Was she responsible for my illness or for my friend's?  I have no way of knowing for sure.  All I know is that we need better ways to help the severely mentally ill and the people they victimize.  And while it would be easy to say Unstable one was purely evil, it's more likely that she was damaged by horrors I can't even guess at--be they brain chemistry, home life atrocities, or more likely a combination of the two.  I hope someone helped her conquer, or at least tame, her demons somehow, and that they aren't still being unleashed on innocent people as we speak.

Letter To My Future Neurosurgeon

Dear Potential Neurosurgeon,


I wish I'd have kept a comprehensive sleep and symptom journal from the onset, but in the beginning I had no idea how long this would last or how bad this would get.  And once I recognized the severity of my insomnia and myriad other symptoms, I was too physically and emotionally drained to do much more than baseline human functioning.  So this is my best recollection of what happened.  I hope that my account can shed some light on what is going on and help us find the root cause and best treatment option.

On June 23, 2016 I filled an ambien prescription.  This was after several months of trying to combat my insomnia with melatonin.  I started with 5 mgs, but after several weeks went to 10 and finally 15 mgs, which I believe is higher than the highest recommended dose.  Needless to day the melatonin wasn't cutting it.  I wasn't eager to get a prescription sleep aid, but I was becoming increasingly desperate.  It was taking me 3 to 5 hours to fall asleep, and then I'd have to be up 3 or 4 hours later with my 1 year old.  I kept thinking the exhaustion would finally become so great that my body would have no choice but to shut down and start getting adequate rest again.  That never happened, so I went to my doctor for the ambien.  Initially I planned to use it for a couple days to get my sleep back on track and then only on really bad nights.  It became clear very quickly that every night was a bad night, so I took the drug each night.  I'd like to mention that the prescribing doctor told be that the script was for a 5 mg dosage, and though I'm generally very thorough and conscientious with my medication I was so sleep deprived that I didn't notice for over 3 weeks that he had given me a 10 mg dose.  So right off the bat I was taking 10 mg, and into the third week when my insomnia persisted I decided to double up 3 or 4 times, taking what I thought was a 10 mg dosage, coming to find a couple of days later that I had mistakenly been taking 20 mg.  I felt angry with the doctor and with myself for not being more observant.  I found a different primary doctor who changed my dosage to 5 mgs, as is the recommended dose for females.  It worked, more or less, for a couple of months.  But my anxiety was mounting exponentially and for no reason I could figure out.  In the past several months I've had at least 4 trips to the ER for what they determined were panic attacks.  One time I even called the ambulance to come get me because I was shaking so badly I couldn't walk and when I tested my blood pressure it was 155/100 (it's generally on the low side), and my pulse was over 150.  The verdict, as ever, was: panic attack.  I was turning into the annoying, dramatic hypochondriac that my local ER would patronizingly attend to while suggesting a visit to in-patient psych.  I understand and believe that mental illness is a real thing.  But the sudden and rapidly escalating severity of my insomnia coupled with various other symptoms that also came on inexplicably led me to believe that there was an underlying physiological problem that required addressing.  At the time I felt it likely had to do with some dysfunction of my autonomic nervous system.  My blood pressure was fluctuating a great deal and my resting pulse was consistently high.  My temperature regulation was all over the board.  I was constantly thirsty and constantly urinating--at least twice an hour.  I also knew that a lot of people with my condition (Ehlers-Danlos Syndrome) often suffer from some version of Dysautonomia.  So I went about scheduling autonomic testing.  I also got a referral for a sleep study.  I also got my cardiologist to order a 48 hour holter monitor.  The autonomic testing came back normal, although I've yet to meet with the specialist who to read my results.  My sleep study basically said that I have a difficult time reaching and maintaining REM sleep (Duh.); no recommendations were offered.  My holter monitor indicated a smattering of palpitations--"nothing to be worried about."  My primary physician ran various tests--electrolyte levels, hormone panel, thyroid etc.  They came back normal.  I thought maybe I'd become hyperthyroid again and it might be an easy fix.  No such luck.  One would think a person would be overjoyed to get such a clean bill of health, and I would have been had I been able to sleep more than zero to three hours a night without being drugged.  And if my panic attacks weren't happening with increasing frequency and intensity, and if the alternating tinnitus and loud heartbeat sounds in my left ear weren't getting louder, and if the feeling like I'm underwater sensation in both ears was beginning to remit, and if the pressure in my head and the pain at the base of my skull and in my neck wasn't getting worse, and if the auras I was seeing around objects when the pain and pressure in my eyes was particularly bad was going away, and if my hands stopped falling asleep several times a night forcing me to shake them back to life before trying to sleep again (I've since started wrapping them and this one symptom has improved--likely EDS related), and if portions of songs didn't get stuck in my head for days, blaring particularly loudly at night when it was time to sleep and sometimes waking me from my sleep and often waiting to torment me right as I woke for the day, making me wonder if maybe I was becoming schizophrenic, and if my sinuses weren't alternately throbbing or numb-feeling, and if on nights when I was miraculously not feeling anxious and was sure my exhaustion would usher me to a natural night's sleep--if on those nights I didn't fall asleep for 30-45 minutes only to wake with a surge of adrenaline than caused my heart to race for 15-20 minutes before I'd fall asleep again, only to wake with the same experience again and again and again so that there seemed no choice but to take the sleeping pill and sometimes anxiety pill, as well.  If that had been the case I would naturally have been thrilled to have all my test results come back normal.
 
There was a period of time, I believe in August or September, when I thought the problem must be the ambien, and I decided to stop taking it.  When I went off the 5 mg cold turkey I had horrible "rebound insomnia" and didn't sleep a wink for two nights, and then only slept 1-4 hours for the next 2-3 weeks.  I had only been taking .5 mg of Lorazapam 1-2 times per week, so discontinuing that wasn't too tough.  The only thing I learned from this ambien detox was what I should have known to begin with---I came to ambien because of crippling, debilitating insomnia that every single natural remedy on the market and every sleep hygiene tactic did nothing to combat.  I wasn't a drug-seeking addict; there was something wrong with my brain &/or body, and I needed help.  At this point my sleep deprivation was so severe that my anxiety and depression had given way to suicidal ideation.  I resigned myself to the doctor's mantra of choice- "It's all in your head" and began an Intensive Outpatient Program, hoping to have ready access to a psychiatrist who could diagnose and treat my insomnia, and the anxiety and depression it was causing or at the very least, exacerbating.   The drug my psychiatrist started me on-- an anti-depressant called Remeron (15mg) wasn't working or wasn't working fast enough and I feared I'd take my life for the lack of sleep, so I was transferred into in-patient psych where I spent 5 of the most hellish and damaging days and nights of my life.  My psychiatrist added Seroquel to my regimen (peaking at 200mg if I'm not mistaken).  This drug is an antipsychotic known induce sleep.  In my case neither the Remeron, nor the Seroquel did anything to help me sleep.  I'd lay awake in a sleepless trance and then stare or cry in a drugged state during the day.  I went off Seroquel within one week and felt more human.  I gave Remeron a full 2 months to do anything, but it failed to impact my sleep or my mood in anyway, so I weaned off and discontinued it. 
Prior to my in-patient stint I saw a naturopathic doctor who ordered some neurotransmitter testing (a urine test), which supposedly indicated that my GABA was very low, my serotonin was on the low side, and my dopamine was elevated.  I've done some reading that has made me a little skeptical about these test results, as the levels of neurotransmitters in our gut may or may not have anything to do with the levels in our brain.  In any case, an expensive regimen of supplements was recommended to heal me.  After paying for the visit itself I could only afford the supplement supposedly specific to sleep.  The supplement was supposed to help with GABA support.  It was called Kavinace Ultra PM.  For 5 miraculous nights I slept on this supplement without ambien.  I thought I was cured!  I thought I'd found the answer!  Then on night six the supplement had the opposite effect--it made me racy and anxious.  The naturopath recommended I try regular Kavinace and I obliged.  It gave me 2-3 nights of decent sleep and then also stopped being effective. 

My current regimen seems like something one would use to put down a horse versus what a 135 pound health-conscious girl should need to take to get 5-6 hours of drug-addled sleep each night:

10 mg ambien, 1 mg clonazepam, 200 mg L-theanine, 3-5 mg melatonin, magnesium, and the occasional Kavinace Ultra PM peppered in for good measure.

The other alternative medicine routes I've attempted include: acupuncture, reiki, and hypnosis.  I've tried listening to soothing music or guided meditation before bed.  I've cut out all caffeine, although I've never really had more than a cup of green tea in the morning.  I've cut out alcohol--again, not a substance I've used immoderately in several years.  And on the rare evening I've tried to have a beer or two to relax it has made my anxiety and insomnia even worse. 

So now I've been informed that I have a 4mm colloid cyst in my brain.  And while most people might be terrified at the prospect of brain surgery, I'm terrified that I'll be told I don't need surgery, that my insomnia and anxiety and headaches and tinnitus and all the rest have nothing to do with the cyst.

When I learned of my Ehler's Danlos diagnosis--a diagnosis I reached through my own research after every doctor dubbed me a hypochondriac; a diagnosis I eventually had confirmed from a geneticist specializing in connective tissue disorders (still waiting on my honorary doctorate from Harvard Medical!), I was saddened, but deeply relieved.  I understood that there was no cure for my condition, and that it would worsen over time.  But I dug in and did what I needed to do to manage it and make my quality of life the best it could be.  I found a Physical Therapist who was familiar with the condition and I attended PT religiously.  I got the various joint braces and compression wear I needed to help me manage during flare-ups.  I learned taping techniques to keep me glued together.  I learned how to pop some of my own joints back into place.  I continued to work on strengthening my muscles and bettering my proprioception through PT exercises and exercise in the pool.  I almost never took pain medication stronger than aspirin, knowing I'd likely need it for later in life.  Instead I strove to eat a healthy, anti-inflammatory, predominantly organic diet and to take things like Tumeric, Glucosamine-Chondrotin, Quercetin, and Bromelain to help manage my symptoms and pain.  I was infinitely proactive about my health in the face of a condition that couldn't be cured.

Now I feel like nothing I do for my insomnia, anxiety, and headaches has helped or is helping.  I feel like I've been dismissed by every specialist and left to fend for myself.  I've been given drugs that are undeniably addictive and that I will, in time, build up a tolerance to.  And then what? 

My only lead is the colloid cyst.  If that isn't the culprit, or if it's only part of the story, can we please work together to find out what is wrong and how to treat it? 

I have everything to live for, not the least of which is a sweet, hilarious, and beautiful 2 year old son.  I don't want him to have a mom who is perpetually exhausted, anxious, crying, and in significant pain.  I don't want him to have a mom who fantasizes about death because life has become a waking nightmare and her sleep-deprived brain believes that maybe everyone would be better off without such a hopeless train wreck in their lives.  I genuinely want to get better.  If brain surgery is the answer, I'm all-in.  If there are other things we can explore, I'm ready. 

Please take the time to figure this out.  I, like every patient you have and every human on earth, am worth it.

Thank you.     

The Philanthropic 4th Grade Inventor

When I was in the fourth grade it was announced that we would have an Invention Fair, and it would be competitive.  I did well in science--because at that point the bulk of it had to do with reading comprehension versus mathematical or mechanical inclination.  So I had yet to really learn my shortcomings with regard to truly inventing and building a thing of science; in other words I was pretty confident I could win the whole thing.  My invention came to me like a thunderbolt and nothing could deter me from the course of my extraordinary vision---logic, reason, thoughtful criticism--nothing.  I will try now in earnest to explain the ridiculous, cumbersome, completely useless thing I somehow convinced my dad to build for me. 

First off, my target demographic was the elderly, disabled, or generally weak population.  So my intentions, as ever, were good.  I was concerned with the plight of the geriatric dog owner who struggled to lift and pour a heavy bag of dog food into a dish, and even for the owners who opted for the slightly less strenuous strategy of scooping the food out with a cup and stooping over to dump it into the bowl.  As far as I was concerned this was unacceptable and it was high time someone devised a system to prevent feeding-of-dog related back strain.  This, friends, was the inspiration for "The Doggy Disher", an invention very much born from the lens of my very limited and specific experience.  Perhaps not everyone owned a German Pointer who ate immense volumes of food.   And perhaps not everyone bought the super mega ultra giant economy sized bag of dry dog food.  And perhaps not everyone hoisted the entire impossible bulk of it with a grunt to pour it into the dog's dish each day, as my dad did.  But I had no way of knowing these things, so I came home and told my parents of my idea with fiery enthusiasm.  The device I was proposing was, in layman's terms, a slide.  And my dad built it for me exactly according to my instructions without offering up any gentle discouragement based on the idiocy of the project that I can recall.  It was a solid wooden structure, about 3.5 feet tall.  The idea was that the operator of this system would keep his or her bag of dog food placed conveniently on a table adjacent to "The Doggy Disher" and would then proceed to use a small scoop to dump the food down the ramp directly into Fido's bowl.  I even drew a picture of a crying dog captioned "More Food, Please" and taped it to the bottom of the food dish to further encourage feeding one's pet regularly. 

I remember being so excited about "The Doggy Disher" that I could hardly sleep the night before the big Invention Fair.  My mom helped me carry my stupidly heavy and unwieldy contraption into the school.  Kids and teachers alike looked on with great curiosity.  I softly beamed at the attention, but didn't say much about it.  I was anticipating the big reveal as the teacher's came by to observe and hear each student's pitch about their invention.  As more inventions arrived I grew a little nervous.  It was always clear whose parents were the most involved, handy, and/or artistic when big school projects came up, and a couple of those kid/parent duos were clearly playing to win.  I took heart that my invention was easily the most enormous.  The invention that had me most worried was an easy-make bed.  It was a lovely little bed, about the size of a shoe box, built with exceptional carpentry and fitted with a tiny, adorable quilt.  The bed could be made or unmade with the turn of a crank.  It was fucking exquisite and I felt my heart sink.  I braced for second place, consoling myself with the belief that my invention would serve the greater good more than some cool bed-making machine, even if all the teachers who were "oohing and ahhing" the adorable mahogany hand crank couldn't see it.  So I was pretty surprised when I came in third, behind a device that dried Barbie clothes, again, by crank power.  Cranks must have been in vogue that year!  I remember sulking and thinking my own cranky thoughts.  Who washes Barbie clothes....ever?...much less enough to warrant a device that would dislocate your shoulder before the clothes ever dried?  I concluded that my teachers valued cuteness over pragmatism, and I lost a little respect for them that day. 

It didn't take much more than a few months to poke holes in the reasonableness, much less necessity, of my own invention.  How were these poor, aged, crippled souls getting these gargantuan bags of dog food into their homes to begin with?  What benevolent family member, friend, or grocer was hauling these bags to them regularly, much less purchasing and transporting the extremely heavy tripping hazard and eyesore, "The Doggy Disher", into their home?  I hadn't really thought it through, I mused with my wise 5th grade hindsight.  But in the end the only thing that mattered was that my parents believed in and humored me to such a spectacular extent that I never had a moment of self-doubt over my brilliance.  They let me unravel my less-than-stellar ideas and talent-deficits for myself as I went along.  They allowed me to determine out how and where I excelled.  And they never shamed or faulted me for anything I tried and failed at spectacularly.  They were my biggest fans through it all.