Nature as my muse

There’s a chill in the air.  It snowed recently a lovely blanket of white across the landscape outside my window, the garages and sparse trees dotting the area in front of the wall that protects us from the sounds of the highway just behind the complex.  My husband and I live in a condo in a very quiet location removed from the hustle and bustle of the nearby shopping district and office buildings.  Sometimes it becomes eerily quiet here, thanks to the newly constructed sound barrier that has all but eliminated the road noise coming through our poorly insulated windows.  We are fairly quiet people to live next to.  We don’t scream too much, play the music too loud, stomp too much on the floor, or run the various appliances in our house past 9 pm.  I started to think today about how quiet my life has become.  There’s the lack of voices for the most part, but that’s not even what I’m talking about here.  It’s the calm of it all, the routine way my days pass by.  I’ve tried to embolden the brushstrokes on the canvas of my days, but I’m the first to admit my life is rather dull for the most part.  And it has been slowly sculpted to be just that.

I’ve been on medication for over eight years now to combat the symptoms of schizoaffective disorder.  Before that I was flighty and rash.  I was quick to anger and to fight, but I was also passionately artistic.  I wrote brilliantly, or so I was told at the time, and my drawings and paintings always were the most celebrated in my art classes.  I was an artist through and through.  I even considered going to school for fine arts, an indulgence my parents were quick to dismiss.  I have mellowed over the years, my muse stifled by the overwhelming quantity of psychotropic agents coursing through my veins.  There are occasional moments of brilliance, where I produce some creation worthy of merit, but they are few and far between.

I wonder on days like these, when the hours go by ever so slowly and torment me with their leisurely pace, “What if I could draw again?”  “What if I could really write like I used to?”  I ask myself what I would do it for, because practicality has begun to take hold at my roots.  I don’t act on a whim, because the consequences could be dire if I do – an impulse to yell at my husband because he’s displeased me for some reason, an urge to stomp around the house and smash things, the temptation to hurt someone or myself.  I can’t be responsive to primal urges, for although they are the impetus for many joyful pursuits, they are also potentially dangerous.  I know deep down I would never hurt a fly, but I always wonder what would happen if I truly let go and responded to my thoughts as they came to me.  The flood of thoughts running swiftly through my conscious mind, and those which hide their faces in my sub-conscious mind as well, have the power to control me should I allow them to.  So instead of letting go and truly feeling life as it comes, I must board up the shop in preparation for the perpetually-predicted storm yet to arrive.  The storm never comes, but my doors and windows are sealed shut nonetheless.  I yearn to break free of my bonds and let the my dreams and desires play catalyst to my actions.  The medication, however, makes my life manageable.  It makes me into someone who is capable of making something for themself.  It makes life simpler and more predictable.  It makes everything quiet.

It’s at these times that I wonder where all of the wonder in life went.  Am I missing the divine inspiration that would drive me to create?  Am I limiting the possibilities of my life by sedating away the not-so-comfortable parts of me?  I can’t be sure.  I can only hope that there will be glimmers from time to time.  In writing this blog, I have found that the act of writing sometimes can expose the artistic soul within me and the joy and genuine gratitude I have for each day that I live to enjoy.  I can feel that spirit stirring within my bones, eager to burst forth and be known to me.  I have felt the softness of warm summer winds on my face and smiled.  I have held a purring cat and found contentment in its comfort.  I have inhaled cold dry air and felt the moisture drawn from my throat by winter’s icy grasp. I have felt the pounding of my heart in trepidation from an unexpected night noise.  These things I have seen and known, these small snippets provide the color on my canvas.  I simply must learn to derive inspiration in new ways.  I can no longer depend solely on the impulses that drove me to create in the past; I must now find inspiration on the outside.  There is much to be had, I am sure, and I will have to start looking externally for that inspiration.  Let nature be my muse and the world guide my fingers on this keyboard and my hands and heart when I touch pencil to paper with the intent to create.  Hopefully, those creations will be worthy of some appreciation.  If I deem them so, I will, by all means share them with you here.

Thanks for listening.

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Serenity

I’m here in the lab on a Saturday.  No, I’m not complaining.  I’m actually overjoyed to be here on a quiet Saturday morning, just me and my cells.  Just me, the mostly empty space that separates each atom I am made of with the fibers of my being loosely coalesced into one body.  I am in control.  I can use the microscope for as long as I want.  I can linger in the safety hood, savor the methodical portioning of media into wells and breathe in sterilized air.  When I don my nitrile gloves and warm up the culture medium on a Saturday, I am at peace.  There are few other places where I find this sort of peace.  The work is simply mechanical, but I focus on every depression of the pipette, every drip of cell suspension into the dish, every bubble in the swirling flask.  My hands become steady.  I am calm.  I’ve long since forgotten the troubles I carried in the door, things that may have haunted me for hours beforehand.  There is good music coming from my computer and I’m waiting for the media to stabilize in the water bath.  I just wanted to share this moment of peace with you.  Because there has to be somewhere where everyone finds peace at some point in their day.  Before I started doing research, my mind was constantly clouded with self-doubt, criticism, pain, and anguish.  I couldn’t find respite anywhere I looked.  I still struggle to get up and come to the lab, as if the journey was not worth the destination.  On Saturdays, we have a required seminar to attend, so I’m here on campus in the first place.  It’s an easy walk to the next building to be in my lab.  My escape.

I’ve been reinvigorating myself these past few days.  I’m in the process of making myself better everyday.  With the voices back, however, I’m far from satisfaction with my progress.  They doubt me, assail me with their negativity, coerce me into only seeing the evil in myself.  I’ve been working hard though.  I’ve made progress.  I’m going to squash my judgmental alter ego.  I recently watched a video provided by my therapist about mindfulness (not without considerable resistance on my part).  I’ve been familiar with mindfulness for quite some time now, since I was last in the hospital.  A year later though, I’ve lapsed in my focus quite a bit.  I haven’t been grounding myself on a regular basis or acknowledging painful thoughts while letting them pass by.  Obviously the letting-them-pass-by concept has not been going so well, considering my recent depression.  But that’s where Saturdays in the lab come into play.  I can focus on all the thoughts creeping in, notice their presence, and let them go out the door as fast as they came in.  I can feel my hands moving according to my will alone and I can take in these moments of peace with open arms.  “I will stop judging myself,” I say convincingly.  In this cold sterile room filled with humming freezers and chiming incubators and gently shaking flasks, I find the will to take care of myself again.  I am inspired by this place of logic and reason, and also hope and promise.  There are so many opportunities for change here, so much promise in fighting cancer, so much discovery and exploration.  My spirit warms when I walk in the door.  It is my fervent prayer that every troubled soul can find a laboratory of their own where they find sanctuary.  Maybe even more than one, if you’re that lucky…

Thanks for listening.

Sunlight

It’s beautiful outside, sun shining down, melting snow and hardly a cloud in the sky.  It’s too bad because I can’t seem to enjoy it for more than a couple minutes before some other part of me takes over that’s angry at the little bunnies and squirrels and birdies that are fully taking advantage of the day’s warmth.  I’ve been angry at the world because there is anger going on inside my head. I’ve pictured some sort of apparatus in there. I keep thinking that the ball will run its course down the corkscrew, light a match by flipping a switch, and cause enough steam to fill the balloon that the needle pops it.  The balloon pops and I am thrown back on track.  Back to optimism.  Back to happiness.  Back to energetically challenging life.  But I read a quote a few minutes ago in a blog post entitled Random Thoughts On Living Authentically In Artificial Times that set something afire within me…

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The person who posted this quote on their blog is decidedly a free spirit in the most traditional terms.  She’s a sexual, passionate, complex, lovely person who has an artistic bent and rejects convention whenever possible.  Lately, I am none of these things.  My muse is gone and she left broken glass from the window she shattered upon her escape at my feet.  These shards are the carpet of my daily walk.  Much like those who have suffered a “living death” before me, I didn’t even realize that my soul had become torn and tattered in the process. I’ve closed my heart off from the world, from the people I love and the places that stir something in me.  I’ve walked blindly on, blood-stained and splintered, until I feel like I can’t take another step.  To think, I’ve almost let them win.  But the ball did spin on down, strike the match and blow up a big old balloon inside my head that woke me up.  “No more walls,” she says.

I’m coming alive as I write this, I can feel the spring going back into my step.  I can feel the fog lifting, the anger settling, the electricity of my being, the sparking synapses.  I am transforming into something marvelous in my mind and that transformation won’t be stopped.  A spirit drifted through the doorway and sat down beside me at the table.  I’ve gathered the folds of her gown, felt their cool softness upon my cheek and smelled her scent in the air.  She is home.  I am awake. I am alive.

Onwards and upwards we go.

A respite. A time of recharging.

It’s been months since I was at it writing for this blog.  It’s been a tenuous time for me, with the end of my first semester of grad school and the holidays and all.  I’ve always had trouble with the end of semester rush of papers, exams, and homework all to be completed quickly and successfully.  The pressure is enough to make a normal person’s head spin, but for me it’s a nightmare come to life.  I really struggled this time.

Sometimes you are met with an intellectual challenge that bars your progress.  Micro-electro-mechanical systems was just such a course for me.  Try as I might, I couldn’t make sense of the material.  It was like Greek to me, and I don’t speak Greek or pretend to understand it.  Physics came too many years ago for me to apply any of it here, and I was never good at electricity and magnetism.  Well, if you could pack more things into one topic that were completely not germane to my work, I would congratulate you on achieving the impossible.  There’s something about the courses here in my nanoscience program that completely stump me.  And with all of this intellectual hardship, my stress level skyrockets and my mood plummets.  We had been stepping down my medication gradually over the past few months, trying to get rid of some excess baggage that I didn’t need in my pillbox.  When all this trouble started to rear its ugly head, my resolve to be strong and solid of mind wavered and I started heading down the narrow tunnel of depression.  I’ve heard people say that depression “hurts”.  It hurt, alright.  I laid in bed just wasting the hours away, my mind lost on some other continent where I lay chained and shackled to a splintered plank, sharks snapping jagged teeth just out of reach of my body.  The pain, the agony of the whole thing kept me in bed often till noon or later, when I would pry myself from the comfort of blankets and pillows and try to apply myself to the academic laundry list before me.  I cried out in pain, alone in the house where no one would see or hear me, and tears flowed freely and regularly as I tried to tackle the homework I hadn’t yet finished, study the material I’d missed from classes I couldn’t bear to attend, and process the reality that I would soon be taking final exams in courses I was hopelessly behind in.  I felt miserable and fell into an unwavering quagmire, tortured by the mounting burden of schoolwork.  At the same time, even if my schoolwork wasn’t front and center in my mind, as I made small victories here and there in completing assignments or reviewing lectures, I still couldn’t turn my funk around.

I started to think of dying.  Not killing myself at first, just of being killed.  A drunk driver, a malfunctioning elevator, a murderous intruder; I welcomed their coming.  One might even say that I prayed for them to come.  Anything to eliminate my responsibility for my death.  A blameless death.  There would be some culprit who my family and friends could blame for my death and it would give them a target for their pain.  They would have someone to blame other than themselves.  But as the days wore on, I started to think that it would be best for me to just be done with it and end my life myself.  This is the moment when you know you are close to hitting rock bottom.  When the downward spiral may just be over and there would be no means of returning to the high ground.  I didn’t plan for it.  I just knew if there was some precipitating event, a drop to overflow the bucket, I would know what to do when the time came.  In all the other times when I’ve become frustrated enough to end my life, it was an impulse.  I just wouldn’t be able to manage the grief, and I would lay my hand down and fold.  Obviously, I was never successful.  I rarely regret the decision to terminate myself afterwards.  I’m just as depressed as I was beforehand and don’t really care.  I get out of the hospital after feigning a complete turn-around from sad to glad and I simmer quietly until the medication takes hold.  It doesn’t usually take long and I tend to be a fairly patient person once I’ve got my head on a little straighter.  Plus, the time in the hospital gives me perspective.  Life doesn’t need to be overwhelming, and if it is, I have friends, family, and doctors to turn to for support.  I always seem to forget this when I’m desperately down.

I called my psychiatrist.  That was probably the most proactive move I have made in my own health in the entire course of my treatment.  I was honest.  I told him I was hopelessly depressed, sleeping more than twelve hours a day, and feeling like death would be a welcome respite from my pain.  No, I didn’t have any plans of suicide specifically, just the thought that I’d gladly let death take me if given the opportunity.  No, the anxiety medication you gave me last time isn’t doing the job.  Yes, I realize that I will have to increase my anti-depressant dosage again.  Drug samples in hand, I returned to the car and  let out a good long sigh.  Why does everything have to be so hard for me?  Why can’t I tackle a challenge with strength and resolve and enjoy success without a month of torture beforehand?  It’s one of those questions that will never be answered, I just need to accept the reality that it isn’t how it works for me.  I will say that I will be less of a procrastinator this semester, make sure I’m studying all throughout rather than cramming at the end and that I will ask for help the minute I feel behind.  But that isn’t me.  That isn’t the majority of students I know.  I just need to be able to handle the final hump with a little more patience and grace, that’s all.  Ring in the new year with plans to be a better student and better scientist.

But today, a couple weeks past the semester’s end, I’m still down.  I’m sedated by the medication beyond my control and against my will.  I’ve had moments of productivity, where I cleaned the bulk of the main living spaces, the closets, and organized both the kitchen and china cabinets.  But I still feel the pull against my heart leading me towards the gloom.  I can’t seem to pull myself out of the hole quite yet.  So back to the doctor’s office I go today, with much the same complaint I had last time, minus some of the anxiety.  It will probably just be an attitude adjustment today, perhaps a tweak to the medication again but not likely.  I’m already taking the maximum dosage.  I will continue to cling to my family for reassurance and hope that the storm rolls over quickly and I can get back to my normal self.  Whatever that means.  The remarkable part of it all is that I’ve been depressed and struggling, but no psychosis to speak of at the moment.  Normally I’d be tormented by voices at this point, the reason for hiding under the covers for most of the day in the past.  But all there remains is a lingering paranoia.  Is that car following me?  Why is that person staring at me?  Are they staring at me?  The answer to these questions is always no, but I can’t help asking.  I don’t drive erratically or walk into a large crowd to hide from my tail, but I think about it nonetheless.  This is better than it usually is, and I’m glad of that fact at least.  Unfortunately the holidays are over and the cheer they bring to my heart is gone, save for the beacon of joy, my Christmas tree, that still stands in the living room.  If it were up to me, it would be up all year round.  However, my husband would likely tire of it and force me to send it back to the garage where it lives out most of its days.  At least right now, he is fine with it staying up for a bit longer.

I wish you all a very happy new year filled with health and prosperity.  Filled with good spirits, productivity, and progress.

Thanks for listening.

Finding myself for the first time.

Well, it’s been a few weeks on the new medication regimen and I’m finally getting back to writing.  So much has happened since my last post, and at the same time, so little has really changed.  There’s been a silence inside of my head for these past few weeks, a quiet that I’ve struggled with considerably.  I’m not going to spend this post talking about all the things that are different about walking around all day without little people talking to you.  Most people can probably imagine this would be a big transition.  Over eight years of non-stop hallucinations and then all of a sudden, nothing at all.  What I am going to talk about is what I’ve learned about myself.  There’s so little about my life that I really understand in an unbiased and objective way.  When everything you do is narrated by a bunch of snarky and nasty people, you stop forming opinions of your own about the things around you and, most importantly, the things you do.  This is the crux of probably the rest of my life, discovering what I truly think and feel without the influence of my belligerent snippy companions.  These are my observations this week:

I’m not always the nicest person, deep down.  Sometimes, when people say things to me that are illogical, I have a tendency to judge them harshly.  I’m not sure if it’s arrogance, but what I do know is that it makes me feel very much like I’ve become the people talking in my head.  And I don’t like that feeling.  I was always opposed to the judgmental nature of the voices, to the extent that I refused to entertain negative thoughts about what anyone did.  If they were critical, I was open and welcoming.  If they threatened to harm people, I was all the more kind and caring towards the real people in the equation.  But now I no longer live a life of contradiction.  My thoughts are my own.  I have to learn to get comfortable with them and manage them.  I have to open the doors, so to speak, to the diverse set of people I will encounter throughout my daily walk and accept them as they are.  That’s hard when you struggle to accept who you are at the same time.

I don’t love myself.  I always thought that it was the demeaning nature of the voices that left me completely dry of self-worth.  Now that things are quiet, I need to start building some of that back.  According to my therapist, my perfectionist nature has caused me to torture myself to a greater extent than most of her other clients.  Karen doesn’t ever lie to me in therapy, and I’ve been seeing her for nearly six years, so I’m inclined to believe her when she says something drastic like that.  I’m never satisfied with the work I’ve done; it could have been done better, more quickly, more efficiently, or with less waste.  I’m critical of my schedule, especially the moments when I’ve got nothing planned.  When there isn’t coursework or research to be done, I find my mind wandering and my focus waning.  I don’t like it at all.  I need to be on point all the time while at school or I feel like I’ve wasted the day.  And at the end of that day, when not everything went as planned, I’m cursing myself out over it.  I attack myself over little things, like dishes left dirty that my husband cleans up or having a messy desk in the grad office, and over bigger things, like the fact that I’m horribly overweight and that I’m probably a bad wife.  For each of these situations I see how I “could” have improved the outcome of certain choices I made, blind to the fact that there was indeed very little I could do differently.  Sending punch after punch in my own direction when I supposedly have so much to be proud of.

I can’t take compliments.  I was telling a woman from one of my classes about my illness and my life after having been given a diagnosis of schizophrenia over lunch when we were planning on working on some homework problems for our nanobiology course.  She was, as per usual, dumbstruck by the pervasive influence of hallucinations in my life and my ability to become a somewhat successful graduate student, the somewhat being added by me, and congratulated me on my achievements to date.  I am a modest person, in general, or so it seems to everyone who casually knows me.  The modesty, however, just reflects the lack of satisfaction I find in my own achievements.  No matter what the occasion to celebrate, I can never really be truly happy with what I’ve done.  I’m always trying to do it better than the next guy, to be smarter than everyone I know, to be the most successful scientist, hoping that someday the validation will come and I will feel truly accomplished.  The fact is that validation like that will never come.  I can’t be the best at everything.  All I can do is be as good as I can.  The more I try to sit with that idea, the more it baffles me.  Why must I beat myself up over spilled milk when there are cookies and a half glass of milk still sitting on the table?  Why can’t I just be proud of what I’ve done without “but” or “except” or “if only”?  Like the number of licks it takes to get to the center of a Tootsie pop, this is something the world may never know.  But right now, I’ll be damned if I’m going to stop licking.  At its chocolatey core is the holy grail of self-awareness, the understanding I seek that will make all of my self-hatred and abuse dissolve away.  I’ve only just started to make my way there in these past few weeks, there will be plenty of time for more progress.  No reason to beat myself up, is it?

I need the people in my life more than I’d like to admit.  So much of my happiness lies in my interaction with other people.  I gave a reading at a wedding this past weekend of two dear friends of mine from my undergrad years at Carnegie Mellon.  Mers, who was the bride, and I have a long history together and I wanted nothing more than for her day to be perfect in every way, shape, and form.  And it truly was.  If there were massive mistakes made on someone’s part, you never would have known it.  It was very important to me to give a good reading during the ceremony and to be there to support her in any way possible.  My husband also attending the wedding with me and I’m sure he felt the same way about his role.  We went to the air and space museum on the way home from DC, where the wedding was held, so Peter could swoon over old jet engines and flying wings.  He thoroughly enjoyed the time we spent there, as did I.  While we drove home, I enjoyed what is the best feeling one can feel, the joy of knowing that I made people happy in some way. Both my husband’s and newlywed friends’ happiness served to magnify my own joy exponentially  I know now that I live for the betterment of those around me, both people I know and those whom I have never met.  If there is indeed any satisfaction to be had in my life, it will be because I have satisfied the needs of someone else, especially the people I love most deeply.

But for now, I’m just trying to live in the moment.  For an easy motivational pick-me-up, try this song.  Music does wonders for the soul.

http://www.youtube.com/watch?v=Fdo8uORFfRQ
Thanks for listening.

 

 

 

Comfort in the sound

Well, I’ve been writing this post over the past few days, each time scrapping the whole thing and starting over fresh.  I’ve struggled with how to share this, with what it means for this blog, with what it means for my life.  But it’s time to get this out there on paper, so to speak.

I started a regimen of Haldol a couple weeks ago to try to lessen the impact of my hallucinations.  It was a modest improvement at first; the week I started showed some quieting of the voices and less visual hallucinations.  But last week, to my surprise and delight, it became quiet in my head and the voices were no more.  On Friday, I realized that they were gone almost completely, their voices were quiet  or just muffled to the point I could no longer understand what they said.  “The struggle has ended,” I thought to myself that night.  But I was so wrong.

I started feeling restless on Friday, not to my own surprise.  My father went into the hospital Friday night, having some trouble breathing and feeling generally uncomfortable.  He’s been sick for about a month now, in and out of the emergency room.  Needless to say, I have been very worried about him and that has taken a toll on my psyche.  My mother has been at the hospital constantly since then and I haven’t been able to see much of either of them.  Saturday morning bright and early I took a flight to D.C. to spend the weekend with my big sister from my sorority.  She’s getting married at the end of the month and we were spending the weekend celebrating with her bachelorette party and bridal shower.  Almost instantaneously after I arrived, what would become almost an endless stream of family drama began.  Mer’s sister seems  to be trying to ruin the whole wedding because of the failure of her own, or so it seems to me.  She was unwilling to attend the party on Saturday at a farm in Maryland where we made aromatherapy products and jewelry, in addition to having a tea party of sorts.  She missed a fantastic dinner at a Lebanese restaurant that evening and the drinks at a nearby bar that ensued at the end of the night.  After making a scene, she finally came to the bridal shower on Sunday in quite a funk.  The whole weekend was fun and filled with meeting new people, despite the drama, and I was overjoyed to see my dear friend again for the first time since my own wedding last year.  But after I boarded the plane Sunday evening, I started to feel lonely.  I chalked it up to the fact that I had just left a new group of fantastic people and that people are always sad to leave when departing after a fantastic vacation.  I wasn’t looking forward to returning home, other than to see my husband and the rest of my family.  Though I usually enjoy the peace of flying and the independence it typically brings, I was just unsettled all the way home.

I arrived at the airport to find my husband waiting with a vanilla bean coolatta from Dunkin’ Donuts and a big grin on his face.  I felt relieved.  I hoped things would improve when we returned home and I picked up my routine again.  I had lots to tell Peter about the weekend and got wrapped up in talking about everything that had happened.  I later visited my dad in the hospital and shared most of the story with my mother and him on Monday.  Even graduate students celebrate labor day.  I returned home after helping mom clean the pool filter and started what would be one of the longest nights of my life.  I was listless, uncomfortable, and plagued by a feeling of emptiness.  I cleaned, I organized, I straightened everything in sight.  Rearranged my nightstand based on an article I read online:

All the while, the quiet inside my head became more and more disturbing.  The silence was ominous.  I haven’t experienced real quiet since I started hearing voices almost ten years ago.  I don’t know how to deal with silence.  For as long as I can remember, or so it seems, I have lived in a noisy world.  Full of shouting and contradiction.  I have grown accustomed to conversation constantly flowing in the background of my thoughts, sometimes coming to the forefront and flavoring almost every moment of my day.  But not now.  There is just quiet.  I feel as though I have no real thoughts of my own anymore, having had them introduced against my own volition for years.  It’s just overwhelming.  I don’t want to seem ungrateful for this gift.  It truly is what I have wanted for years.

My therapist told me yesterday that I am grieving their loss.  I broke down in her office trying to explain my frustration and sheer distress at the whole situation.  I will need to infuse my own thoughts into my conscious mind, talk to myself inside my head, or fill my head with other sounds from external stimuli.  I will need to adjust to silence.  Adjust or bust.  Her council is that I try to do things to stay occupied so that I don’t feel the emptiness so profoundly.  There is no amount of activity that will make this manageable.  All that I prayed for all these years is now reality, but I don’t know how to face another day or silence.  So now there is the question.  Do I take this little orange pill and whisk away the noise that clutters my thoughts?  Or do I accept their rightful place in my mind and deal with the repercussions.  The choice is mine to make.  What should I do?

Your thoughts on this subject would be much appreciated.  Thanks for listening.

Cancer is…

Every day, I look at cancer.  For me, that everyday cancer comes in the form of cells under a microscope. Cancer cells seem so innocent when you look at them under magnification, so normal.  Ovarian cancer cells, which are the focus of my work, come in several shapes and sizes, depending on the type of disease they were isolated from and their metastatic potential, but none of them particularly menacing.  I remind myself every day, however, that these cells are killing people right now, some that I know personally and many others whom I don’t.  Cancer has crept into my life several times in the recent past through the battles of dear friends against this horrible blight.  Their stories merit sharing.

Paul was a fantastic grandfather, father,and husband.  He was a friend and had many friends in return.  My fondest memory of him is from our wedding last year.  We decided to give books away as favors for our wedding guests, a specially selected book for each person.  Paul was never a big reader, but he did have a big sense of humor, so I took special care in selecting his book.  I’ve always been a big David Sedaris fan.  When you scan my bookshelves, you’ll find a special little corner devoted entirely to his work.  So when the time came to choose something comedic and light with the kind of wit and personality that would suit Paul, I turned to Sedaris’ book, Naked.  There’s a picture in my album now, showing Paul opening the wrapping of the book; his joyful face, laughing heart, and wide eyes tell the whole story.  It’s a story of a man who hasn’t experienced much joy as of late, as he struggles with round after round of chemotherapy and radiation, but still relishes every moment spent on this earth with family and friends.  As those stealthy innocent-looking cells spread through his bones and grew out of reach of every conceivable treatment, Paul’s spirit never wavered.  When I walked 27 miles overnight for the ACS Relay for Life at the University of Albany in the spring of 2011, I did it for Paul.  And he and his wife, Phyllis, were forever grateful.  After he had lost his battle with cancer and moved on to the second phase of his life in the kingdom of heaven, his family held a memorial service for him at the church we all attend.  It was so moving to hear the stories told of his life, all sweet recollections of his kindness, industriousness, and generosity.  His grandson even put together a medley of songs played on an acoustic guitar which he had enjoyed hearing while with us here on earth.  Everyone gathered following the service in the lounge below and each person appeared with expressions mirroring their paradoxical emotional state.  Smiling with the joy of having witnessed a life fully lived.  Tears of grief flowing freely at the thought of life without him.  I miss Paul every time I look at that book sitting on my shelf, every time I look at that picture, and every time I think of what cancer has taken from this world.  Cancer is greedy, but we will not allow it to consume our hearts.

Our pastor’s mother lost her battle with lung cancer a year ago as well.  I didn’t know her at all, but I have always felt a close connection to our pastor, Iona, so I felt her grief nevertheless.  What seemed like hundreds of people gathered in a little church in her hometown about 30 minutes from my home to attend her funeral service.  So many people came  to pay their respects that my car got boxed in and I couldn’t leave the church for nearly an hour after the service concluded.  When the cancer entered her bones near the end of her struggle, her hips fractured from the force of her coughing.  Her decline seemed so rapid to me, but Iona and her family always put on a brave face when asked about her condition.  Their strength in the face of adversity is the kind that makes you feel guilty for being depressed sometimes.  When I’m depressed, I know it’s because of brain chemistry, but there’s no avoiding wondering what could be so wrong in my life to make me feel this way.  Faced with this sort of situation, the average person would most certainly sink into depression.  But it’s extraordinary people like Iona and her family and Paul’s family that remind us of the resilience of the human spirit.  Cancer may have claimed this woman’s body but it did not claim her soul, nor those of her loved ones.  Cancer is ugly, but it will not stain the beauty of our time on this earth.

John is a very kind, gregarious man.  His greetings always include a strong hug and a peck on the cheek, a smile, and a wink.  He is the life of the party and deeply spiritual at the same time.  I met him and his wife when I joined our church almost 5 years ago.  Welcoming and friendly, he always made me feel like an honored guest wherever I went.  Though they have begun attending services at a different church recently, John and Cindy make regular appearances at the shed of our church on Tuesdays, where we sell second-hand furniture and other goods that have been kindly donated by members of the community in order to raise money for mission efforts.  Recently, John was diagnosed with Acute Myeloid Leukemia.   To be completely honest, I am devastated at the prospect of losing such a dear friend.  As he begins chemotherapy and continues to fight for his life, I reflect on my memories of the time we spent together.  Memories of his spirit and his joy.  Stories that will bolster my hopes for his speedy recovery.  All we can do is wait now for the treatments to start taking effect.  Donating blood and getting enrolled in the bone marrow donor registry seem like inadequate means to help him and his family, but anything I can do I will do for now.  There have been a lot of advances in the treatment of adult leukemia as of late, but the process is long and painful for all parties involved.  I am hopeful, however, despite the odds, for his full recovery.  John is strong and he is ready to fight; with his friends, his family, and the lord at his side he truly cannot fail.  Cancer is evil, but the spirit of humanity will triumph assisted by the power of science and our everlasting protector above.

Cancer enters everyone’s life at some point, whether through a family member’s struggle, a friend’s, or their own affliction.  Though every day of my life is spent thinking about cancer, I never realized what an impact it had on my own life.  It is a reminder, like all painful things, that we must face each day with strength and bravery.  We must confront adversity head-on and defend our safety, our peace, and our well-being.  There is no end to the fight for life, nature has made it this way.  But cancer will not win, because we are ready for a fight and are primed for victory.  I just feel blessed that I have an opportunity to contribute to that fight in my small but meaningful way.

Thanks for listening.

A year older. A year wiser.

Today is my birthday.  I’m twenty-seven years old today.  I’m one year wiser and one year more in awe of the way my life has changed since I was diagnosed with schizophrenia/schizoaffective disorder.  It’s been a year full of ups and downs, a rollercoaster ride of sadness, pain, hope, and joy.  I’ve learned new ways to cope with my illness, made new friends I cherish, started a new career and graduate school program, and built a life with the man who makes my world tick, my husband Peter.  I’ve said it before, and I’ll say it again; Life is not perfect.  This birthday, while far from perfect, has been the best I ever had.

Earlier in the week, we decided what we would do for my birthday.  Redecorate our bathroom.  We shopped for new towel, art, and a mirror on Tuesday, in addition to choosing a lovely shade of gray for the wall color.  My husband always surprises me with his design sense.  We were at the store looking for artwork and having no luck.  Gray isn’t the easiest color to match artwork to when you don’t want something bold or vibrant or outrageous that will jump off the wall and scream at you.  Or at least, that kind of artwork wasn’t available in that store.  Peter has Asperger’s disorder, which impairs his functioning and comfort in social situations.  As a result of his anxiety, I try not to take him to too many stores in a day.  One-stop shopping is always our goal.  Anyway, we were just about to give up when some plates caught his eye, stark white with black branches.  Perfect for the empty wall we hadn’t yet filled with towel bars or shelves or other framed pieces.  Like I said, he has an eye for these sorts of things.

Last night, he got really motivated and decided he wanted to put in a new toilet.  We had thought about it when we were at the store on Tuesday and even considered models we might choose to replace our dilapidated old one that barely flushes.  So we went to the store and debated between two choices, a traditional look with a trimmed tank cover and a streamline diminutive model with a closed trap-way.  After much ado, I got my way and we picked up the streamlined one and carted it off to the register with a few other things, including two new hoses for the water supply.  Why did we get two hoses, you ask?  Because we forgot that a toilet only takes cold water.

After lugging the beast upstairs, we slid it into the bedroom and opened the box.  It was really heavy.  Really.  Peter started  disassembling the old one as I was reading the instructions.  Seems easy enough.  But first, the old toilet had to go.  After a couple minutes the supply line was disconnected and the tank was off, leaving just the bowl behind.  He unceremoniously yanked the bowl off the floor to reveal a completely disintegrated wax ring and broken floor flange.  No wonder the old one wobbled so much.  We didn’t know how to fix the flange, so we just cleaned away the old wax and tried to resettle the broken piece in the right place.  It was hardly a good solution, but Peter isn’t easily deterred from home projects, even when we’re in over our heads.  New wax ring on the toilet base, line up the toilet with the new bolts and set it in place… seems simple enough, right?  If you have never installed a toilet before, you are certainly ignorant enough to think so.  After some grunting and groaning, we got the toilet seated properly and turned the nuts that were supposed to hold it in place.  Unfortunately, the damn thing rocked all over the place.  No good.  That broken flange was a real problem after all.  Nothing was holding the toilet firmly on the floor on the right side, so it constantly moved around as we tried to install the tank.  But we pressed on, connecting the tank to the base and starting on the supply line.  Wrong size coupling at the source end of the hose.  Back to the home improvement store for new hoses.  In the meantime while he was gone, I started assembling the seat.  Two plugs that held the seat to the base, which we had looked at before, had grown legs and disappeared.  I searched everywhere, but couldn’t find them.  And then I thought, “They’re probably under the toilet.”  Peter returned shortly with new hoses and I broke the news to him.  We searched again in vain, all the while with me saying that they were stuck under the toilet.  He didn’t think that was funny or possible.

We hit yet another snag around 10 pm.  The new hose was too short to reach the water shutoff.  Strike two.  I told Peter it was time to throw in the towel and call a professional.  I was tired.  He was tired.  We needed to clear our heads and clean up the mess and have someone fix the floor flange before anything could be done with the toilet.  The problem with that is we only have one bathroom.  One toilet.  Our only toilet now lay in pieces in the bathtub.  “I guess we’ll be peeing in cups tonight then,”  I said with a sigh.  He was so apologetic that you couldn’t really be angry with him, though I wasn’t angry in the first place.  I’m used to hitting roadblocks.  I’ve learned to be patient with life.  Peter, on the other hand, hasn’t gained the wisdom of years about patience yet.  He is five years younger than me, after all…

We cleaned up the mess and scheduled an appointment with a plumber in the morning.  At that, he decided he wanted to start painting.  I gave up and went to bed.  It was 2 am.  I fell soundly asleep quite quickly and don’t recall what he did for the rest of the night, but when I woke up two walls were painted and he looked a bit tired.  Then the plumber called.  “Not available to come until between 4 and 6 pm.  Huh.”  We decided to call another person and they agreed to come out in two hours.  Problem solved.  My husband went back to the store to return the first set of hoses and buy new wax rings and flanges and a hose of the appropriate length.  The plumber arrived shortly after he returned, huffing and puffing up the stairs and smelling of beeswax and booze.  I suppose that’s the best you can do with such short notice.  He got right down to it though, bracing the broken floor flange and setting a new wax ring in place.  He and my husband had the bowl down securely after a little fussing to line up the bolts with the holes in the base and tightened down the bolts to hold it in place.  The coveted hose, which was supposed to be the perfect diameter and length, was a bust, however.  “It’s for a faucet,” the plumber said with little enthusiasm.  The color drained completely from Peter’s face and then returned replaced with scarlet red.  Strike three.  With the difficult part having been completed, the plumber took his payment and hit the road after providing a few helpful tips about adjusting the water level before he left.  Peter and I returned to the store again.  Correct hose in hand finally, we returned home and finished the toilet install.  By the way, the plugs were indeed under the toilet, just as I predicted.  Peter decided to finish the painting after cooking lunch for us.  Chicken quesadillas.  So good.  Feeling under the weather with a sore throat and the sniffles, I decided to take a nap on the couch with the cats while he finished up.  When I woke up, the bathroom was a cool shade of gray and the toilet a pristine white.  It looked fantastic.  Final touches were in order.

We rehung the bars and shelves, hung the new mirror, and the plates (after a heated argument over how they should be oriented on the wall), followed by the new towels and shower curtain.  Everything looked absolutely perfect.  I placed the porcelain box with the elephant on the lid atop the toilet lid with a flourish and stepped back to admire the new look.  Here are some pics:

That’s my husband yawning after a long night of remodeling.  He looks like he’s trying to eat the camera, to me.  Notice the lovely shower curtain in the background?  Love it.

Apparently our cat likes the new toilet as well.  What’s not to like about a chair height eco-saver with power flush and modern styling?  I don’t know.

So that was my birthday.  After a nice dinner of steak and broccoli cheese rice  I’m sitting here telling this story to all of you.  I’m twenty-seven today.  And I got a toilet for my birthday.

Thank you for listening and goodnight.

Sometimes things are better left unsaid.

A dear friend of our family passed away last week.  Well, the father of a dear family friend anyway.  He was an upright, honest, kind, and caring man who was loved by many, but particularly his family.  Needless to say, a lot of time was spent this weekend helping make arrangements and planning and preparing for the open house following the burial.

I am a soulful person.  People’s pain touches me deeply and I feel a need to protect people from physical and emotional harm that goes against every paranoid bone in my body.  If I see a woman struggling to push a cart to her car, I offer to push it for her.  If someone drops something in a crowded hallway, I’m picking it up and running shouting after him.  When I see people suffering, I offer the best gift I can give them, which is a warm comforting embrace.  I’ve been told that my hugs are particularly good.  I am a firm with my hugs, I let them linger a bit, and I put my whole heart into them.  For me, it’s a way of connecting spiritually and physically with a person and trying to transfer some positive energy that will soothe their pain.  What I have always longed for is my equivalent in the world, someone who hugs with that depth of sincerity and honesty, who puts everything in to it and accepts everything the other person is sending his or her way.  My husband gives that kind of hug.  He doesn’t have the capacity for dishonesty in his emotions because he’s just very sincere with his feelings about people.  When he hugs me, I feel the whole world melt away and all of my pain and suffering goes with it.  He is my safe harbor.  He is my rock.  And I really needed him today.

First off, I want to say that I love my mother.  She’s cared for me when I’ve been sick and helped me learn to work hard and be loyal to those you love.  She has always supported my pursuit of an education and the career choices I have made thus far.  But lately she has shown a side of her which I knew was there deep down even though I pretended it wasn’t.  Mom’s broken shoulder has turned her into a shell of her former self.  Rather than rising to the challenge of having physical impairment, as she’s always expected of me, she has emotionally crumbled.  She is frustrated with the limitations that have been imposed upon her, as is expected, but instead of taking things as they come, she is lashing out at anyone and everyone whose ear she can bend.  When people ask her how she’s doing, she puts on that brave face and says how much progress she’s made and that things are improving each day.  At least with people other than family, that is.  At home, she is practically snarling on a constant basis.  She drones on about how much she is not able to do and how no one is taking on all the responsibilities of the house.  She yells at my father because he’s in failing health and hasn’t done anything to help himself in years.  I know she loves him deep down, but I hurt for my father as she berates him and belittles him and beats him down.  I tried to get her off the subject today, but she later yelled at me for supporting him when he had “done this to himself”.

My dad has never taken very good care of himself, but he doesn’t do it out of spite.  He just loves food and being social and has let himself go over the years.  He’s had a bad heart his whole life and his lifestyle has finally caught up with him in the past few years.  A quintuple bypass about seven years ago scared him into shape for a while, but when he left to work in Pennsylvania, he ignored the council of his doctors about increasing exercise and eating a healthy diet.  He’s gained weight steadily, like the rest of us, but his health conditions make the weight much more dangerous.  I have cautioned him against eating too much and tried to get him to take more walks, but my dad is my dad.  He hears what he want to hear.  Even now, when he is standing at death’s door, he doesn’t understand the seriousness of his errors.  He still thinks a pill will make it all go away.  She is eternally frustrated with his attitude about life and she makes no attempt to hide her contempt for him.  When she talks about the mess he’s put her in, I have a strong desire to give her a piece of my mind.  My father is depressed and has been for some time.  Years of verbal abuse from my mother is enough to get anyone down.  I know firsthand.  I think she will still put him down while he lies six feet under in his grave.  She will have to go back to work.  She will have to support herself instead of depending on her sick husband to make ends meet.  I know, I’m supposed to feel sorry for her.

Today she pushed me over the edge.  She had the gall to tell me I didn’t understand what it is like to be physically incapacitated, as if my accident didn’t land me in the hospital practically unable to move for 3 weeks, as if I hadn’t endured surgery after surgery trying to get back on my feet.  There’s no one waiting on her hand and foot, like she did for me.  There’s no one helping around the house that she is solely responsible for, according to her.  My grandmother, who tries endlessly to help her and keep her occupied, is old and feeble and can’t do enough to satisfy her needs, or so she implies.  When she started in on me about a comment I made about giving up three days to help her, I couldn’t contain my anger.  You think breaking your shoulder hurts more than falling off a bridge?  You think your suffering is more important because you’re no longer able to weed the beds or clean the pool filter?  No longer able to socialize at church as much or drive around freely?  Welcome to my world, mom.  Her ignorance enraged me.  She doesn’t see the pain in my soul and in my body because I hide it.  She doesn’t understand what it’s like to be me.  To hear voices and still act normal in front of people.  To be the only twenty-something I know with a handicapped parking pass.  To struggle with pain, frustration, and exhaustion on a daily basis.  No one really understands a schizophrenic’s life except a schizophrenic.  My normal urges to soothe and comfort her went out the window this afternoon.  I lost all compassion for her and I blew up like a bomb.  All of the years of pain I have endured at her hand flowed freely from my soul and I willed that pain her way.   I walked out the door feeling abandoned and wronged.  Sometimes things are better left unsaid, but sometimes you have to stand up for yourself.  I will no longer lose self in order to fulfill and satisfy her.  I will no longer abandon my own feelings because I fear her anger.  I am my own person, and with or without her support, I will live happily on.  Or maybe I’m just angry and need a day to cool off before begging her forgiveness.  Either way, I know more about what I’m made of after today and I wont forget it for a second.

When being sociable isn’t so easy, it’s best to be an actor.

Sorry for the long hiatus from posting, but things have been hectic at work and with my husband and mom recovering from their respective maladies.

Today I want to talk about my dealings with social situations in the midst of significant psychotic symptoms.  Last night, my lab group went to dinner to celebrate the end of our undergraduate interns’ program and poster presentation, which is today.  My husband was invited and came along with us, despite the fact that he isn’t very good in social situations (I was super proud of him).  Lately, I’ve been having trouble with auditory hallucinations.  Whenever there is some kind of white noise, like fans or the AC running, I hear someone speaking on television just out of range of where I can hear exactly what the person is saying.  It’s frustrating, to say the least, and leaves me wandering around my house at night trying to get closer to the sound so I can hear the words, not just the noise.  Needless to say, I haven’t been in top form at work or otherwise.  I’ve been coming into work late because I’m too exhausted to drag myself out of bed, even at 9 o’ clock in the morning.  Thankfully, I work in academia, where there isn’t too rigid of a work schedule.  You can pretty much come and go as you please as long as you’re getting your work done.  But back to going out.  We went to a Japanese hibachi and sushi bar for dinner, which was a lot of fun for everyone except me.  It was noisy there, with all the spatula flinging and tapping and people talking loudly.  I am set on edge whenever I go out in public.  There are so many ways that someone could sneak up on me and harm me or someone I care for; there is no controlling the situation.  I worry about what people are saying about me out of earshot and what they think of me.  I wonder if they can tell how nervous I am or how concerned I am with what they’re doing.  I even wonder if they are associated with some dangerous sect that plans to annihilate the building and everyone in it.  I know it’s silly to think these things and consciously can rationalize why my concerns are unfounded.  But like all other schizophrenics, there is a part of me that never believes that people are safe to be around, no matter how hard I try to deny it.

All the time I am running this thread of distorted thinking, as they call it in the mental health community, through my mind, I’m trying to put up the pretense that I’m enjoying myself.  Allowing the chef to toss zucchini in my mouth and squirt saki at me.  Chatting about my foodie experiences and my familiarity with Asian cuisine.  Sharing laughs over annoying people at work or the strange thing someone did last week during seminar.  People don’t tend to know that I’m acting, or they don’t seem to, and I’m very pleased with how well I’ve progressed as an actor in social situations.  Unlike some of my schizophrenic brothers and sisters, I am blessed to have the capacity to fake it convincingly and consistently.  Before I got sick, I was a gregarious and sociable person, but never felt like I was well accepted by my peers.  Even if people openly lauded my actions and praised my work, I couldn’t get past a deep-seated fear that they weren’t being sincere.  So I learned to pretend I was comfortable with their attention and even to engage people in new friendships outside of my own circle.  When I began my downhill slide during high-school, everything got harder.  I became overly concerned with other peoples’ judgements of me and their honest impressions of me.   By the time I reached the height of my untreated illness as a sophomore undergraduate in college, it became nearly impossible to hide my condition.  I spent days hiding in my dorm room so I didn’t need to face anyone I didn’t know well, even if that meant missing classes and exams.  I even stopped talking for fear that I might say something stupid or suspicious.  So many people with psychotic illnesses are out there doing the same thing as I am though, faking it to make it.  The positive side of this whole equation is that when the medications are right on and I’m not suffering from constant paranoid and distorted thoughts, I can actually let go and enjoy my time with people.  I’ve learned that faking it really does help you to make it work.  Like putting a smile on your face consciously to fight depression, engaging in social situations despite extreme personal discomfort can help you to learn skills that will make it easier in the long run.  It’s taken years for me to make any real progress, but I can eek out a nice outing with my husband or other family members on a regular basis.  I’d like to be more comfortable with people I’m not too close with, but then again, even the most mentally healthy person can struggle with feeling secure in social situations.  It’s just human nature.  I’m no longer putting pressure on myself to perform, like I used to.  I’ve learned that doing things at your own pace keeps you from getting too anxious and having setbacks.  In the seven years since I was diagnosed, I’ve realized that everything will come with time as long as you are willing to take baby steps towards your goal.  It’s okay to go a few steps back every now and then and it’s okay to avoid the things that stress you for a time, but in the end, a little tough love for yourself can go a long way.  Being an actor isn’t the worst thing in the world when you’re struggling with being around people.  On the contrary, it actually might be the best medicine available.