My experience of It, just a bit ago

My sadness is so deep that I cannot bear it
It has been around for a while this morning
Though for the most part, not so intense as to impair my ability to function

I found tissues
All over the floor
That I had neglected to toss into the wastebasket
I wonder how long they had been on the floor
I wonder why I hadn’t noticed them before

I slept in my clothes last night
Just collapsed on my bed
I didn’t shower this morning
I didn’t change my clothes
I just kept on the ones I’d slept in

It got real bad
After I wrote the last bit
I sat in my chair
My thoughts were all over the place
Jumping everywhere

Then, It began to torture me
And I felt It’s torture
And sat with the torture
Knowing I deserved whatever It was doing to me

After a time,
I got up and made coffee, and I knew
The torture, the confusion too, were gone
And all that was left was the head pressure, which was intense
I made coffee, ate a bit of my banana, that I bought at the convenience store
Yesterday, and drank a little water
I brought my coffee to my desk

And then the torture returned
Again, I sat with it
I deserve torture
I suffer with torture anyway, everlasting sadness
This torture, that It was putting upon me
Was unbearable sadness
Like the shredding of my heart
Of my innards
Of my soul
And then the torture passed

I drank my coffee
Coffee frequently helps the head pressure.

The online grocery delivery person arrived
I knew what to do
As most of the confusion had left me
Smile at the guy.  Tell him where to put the groceries.
Sign my name.  But when I signed my name
I wrote my first name twice
This is the second time I’ve done that.
This time, I really didn’t give a shit.

I am always so deeply sad

I am always so deeply sad and grieving
There has been so much loss since the race
I am not the person I was
Funny how life can change overnight

But there is one thing I want to say:
I grieve.  I grieve.  I grieve.  There has been so much loss
Since I left the hospital
And I have told not a soul
Or, shall I say, I have told horrendous lies
To a number of people
I do not want to feel.

I do not want to feel.
I do not want to feel.
I do not want to feel.
I do not want to feel.
I do not want to feel.

So I don’t.


The “Feelings Box”

Bad things happen to me more and more.  I think it is because It causes them to happen.  People avoid me because of It.  You can see it on the bus.  It drives people away from me.  It scares people.  People anxiously pull their children away from me, frightened of It.  I have an odor I cannot wash off of me, no matter how hard I scrub myself in the shower, the odor of It.

It puts a knife into my heart and it breaks open and bleeds and bleeds all over my body and soul.  I have blood on my hands and I saw this blood when I was on the bus today.  It is blood from my broken heart.

I put my feelings, which I could no longer bear to feel, into a box today, closed the lid, and locked the box.  I brought the locked box to therapy and set the box on a table.  I explained to my therapist what was in the box.  She knew I couldn’t open it, not today, maybe not for a long, long time.  I do not want to feel.

I can control my feelings because It controls my thoughts.  Even when I am not experiencing It, this is the case.  I choose to control the small part of myself that I still have control over.  It owns the rest.

It makes me do things sometimes, too.  I cannot reveal the details of this to anyone right now…nor can I reveal the mechanism by which this takes place, or what, exactly, It makes me do.  Please do not try to guess, because you will surely guess wrong.

Today on the subway, I told myself I must always hide.  I told myself I should always have a long, bulky jacket to wear, even in summertime, to hide myself.  Last summer, I always hid my skinny arms.  Now, I must hide my entire body, even my face.  I must keep my head bowed, and keep my jacket zipped over my neck.

When I am influenced by It, I keep my eyes only one foot in front of me.  I cannot control this.  I bump into people.  This, of course, cannot be helped, either.  For these moments, and for other times, I have practiced and practiced the line, “Sorry, disabled.”  So I will say this if I bump into someone.  I have had to use the line…once…on the bus.  Lately, I haven’t been bumping into people.  This is because they are avoiding It.

In the subway on Friday, I was so afraid I’d go over the edge onto the tracks at the Red Line the other day that I ended up taking the elevator instead of the stairs.  Then I took the stairs out of the station. I had my line prepared: “Sorry, my voices are bothering me,” but I didn’t have to say this to anyone.  Then after I walked out of the station, I kept my head way, way down.

I keep my head down a lot these days.  Maybe it’s because I don’t need to see.  Maybe it’s because I don’t want anyone to see me.  Maybe it’s because seeing is believing.  Maybe it’s because if you look someone in the eye, it means death.


If you’re interested in my book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness, see the upper part of the sidebar (on the right) and click on the book purchase link to see an excerpt.  This will take you to the publisher’s website.  The paperback will be coming out…eventually…not sure when.  Click here to go to my home site and see more excerpts.

I wonder if

I wonder if my life is really worth living…the way things are now.  I try to just “be happy,” and I cannot.  Everything breaks my heart and my heart is broken.  It feels like my heart will never be fixed.

It feels like It has become an entity, a person, a thing, a force, a power, a presence, a being, someone who is always with me.  It has wants and desires, and is capable of acting, cruel acts specifically toward me.  It has the power to control my thoughts.  And that’s a lot of power.  I thought I controlled my thoughts.  Well, no more.

I would like to know

Over a period of time, my treatment team is likely to get very frustrated with me.  As my treaters in 1996 and 1997 ended up doing, my current treaters, too, may conclude that I am playing games, lying about my condition, trying to get attention, and faking illness.

Well, I am not.  This is real.  I am not lying, faking, playing games, or trying to get attention.  In 1996 and 1997, I was insulted that my doctors thought this of me, but given that my self esteem was in the gutter, I never told them this.  I simply complained and complained about The Thing, and begged them for help.  Since I was being treated for “faking illness,” and therefore being treated for the wrong diagnosis, I got no help…I was only kept alive.

If this happens again, I might as well can therapy.

It is real.  It is dangerous.  It…has completely changed my life.  I have a very sad life now.

Sorry, readers, to bother you with all this.

Further thoughts

It is pointless to write about the patterns of It anymore.  It comes and goes.  Once It is gone for the day, It is gone.  You never know when It will start, and when It will finish.  Sometimes I am lucky and sometimes I am less fortunate.  Sometimes, I will experience It three times in one day.  Sometimes, only once.  Once in a blue moon, not at all.

I do know that It renders me completely non-functional.  The only safe, productive thing I am capable of doing while experiencing It is to write, mostly in pencil.  And of course PET PUZZLE.

I ought to write a lot, don’t you think?

More thoughts

Most days, all I feel is despair.  I eat very little.  I have very little hope in my heart.  I have  glimmers of joy, but these are becoming fewer and fewer as time goes on.

It has been less than two months that I have been experiencing It.  They don’t yet know what It is.  They may not for a while.  And it looks like It will go on and on.

No, I am not “doing this to myself.”  Trust me, there are concrete physical symptoms that go along with the scrambled thoughts I experience.

As time goes on–it is inevitable–my treatment team will believe me less and less regarding the existence of It, unless It shows up on some neurological test.  The Thing didn’t show up on any test that was administered.  After a while, they decided that I was “faking it.”

I risked my life trying to get to therapy on public transportation yesterday.  It was raging.  I nearly walked off the platform on the Red Line at Central Square because I was so confused.  That would have meant certain death.  Not to mention having had to walk in traffic, cross streets, etc.  I actually told this to my therapist.  She obviously didn’t believe me.

Like my eating disorder, It follows me everywhere, and, like my eating disorder, It kills.

I do not like having a killer inside my head.


View an online magazine, Quay Journal, that has published excerpts from my book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness. Check the table of contents.  There are two separate memoir sections of my work.

The It Notebook: February 4, 2011

February 3 I did not write in the It Notebook.  I slept all day long.  Literally.

Feb 4, 2011

I slept all day yesterday.  Missed my appt with my T. I woke up @ 11:30!  I now know why.  I had a bad reaction to DayQuil.  I did not read the warning.  It says right on it.  I am stupid, stupid, stupid.  You can read it on the Internet, too.  No antidepressants, and on the Internet––it mentions, specifically Effexor–raised BP.  Shit.  I was soooooo lucky.

Not only that, I shit in my underwear overnight…

Even at 11pm, I still felt lousy.

I ended up with It 20 minutes after getting up this morning, but was able to pass the Hemingway test, so I knew I was okay enough.  And in fact I improved considerably while brusing Puzzle’s teeth.  My former T has said many times that brushing Puzzle’s teeth sounded like such an intimate thing to do.

I know that It is raging right now.  I’m supposed to call someone at 10:15 hopefully I’ll be okay.  PET PUZZLE.


2 hours till I leave for therapy.  Hope I’m okay.

I can’t do math but I think I’ll be okay by 1pm.

Well, I wasn’t okay getting over there.  Long story that I don’t want to delve into at the moment.  Therapy was interesting and I wish I remembered more of what my T said.  Something about It serving a purpose.

It is 12:35 at night

I do not want to go on.

I am tired of my sad life.

Today, I posted on a service dog message board, and all they had to say was that Puzzle was aggressive an eventually would have to be euthanized.  First of all–not true.  Secondly–not supportive.  Thirdly–this totally got to me and I felt hurt and angry and I don’t want to go back to that board.  I don’t know what’s true and what isn’t anymore.  But one thing I do know is that Puzzle is not aggressive and what they said did more harm than help me.  I thought message boards were places where people were supoortive and kind and caring, especially message boards where the constituents have mental illnesses.

See, I try to reach out, and it is not working.

Guess I need to reach out elsewhere, like I did, six moths ago, when I met Frank.

All I know is how much I love Puzzle.

I’d better not go to that board anymore.

The whole thing is a bummer, though, cuz clearly, my SD idea probably won’t work out.

But what Puzzle gives to me and the love we share will always be here, and hasn’t wavered.  She cannot read words on a computer screen, after all.  She doesn’t let a message board get to her.  So why should I?

Meanwhile…My T implied today that It will be around for a good while.  Guess I might as well get used to it.

She talked about coping skills.

What is there to cope with?  Sadness and despair….

It is 1:30 in the morning.  I feel like I am already dead.  Because this is not living.  Fighting off It for the next year or so is a wasted year or so.  What the fuck happened to me?  I remember clearly when I had The Thing, and Joe got sick, his parents did everything they could to keep the two of us separated, because they blamed me for his sickness.  And so we both suffered separately.

But circumstances changed, and his parents lost their power.  We were together again.  I believe that this was around the time that The Thing went away for good.  Of course, no one believed me, at the time, that The Thing existed.  So they didn’t understand what a joyful thing is was for me when The Thing left me for good.


I am tired.  Sick of it all.

Just want to bury myself.

I guess bury myself in a grave and not get our of it.

But the ground is cold and hard, frozen solid in January and February.  So why would I find a grave so inviting?  Why does a frozen place seem warm?  Am I crazy?

Well, yes.

They say that when people are freezing to death they suddenly feel warm, and discard their clothing.

But I am not naked yet.

So there.

The It Notebook: Wednesday, February 2, 2011

Just to let newcomers know: I am publishing notes from my It Notebook, a notebook I have kept on It, the psychotic phenomena I currently experience.  It is possibly that It comes from seizures.  This has yet to be determined.

Further Adventures With…It…and Puzzle….

February 2, 2011 Wednesday

Well, that does it.  My mind is made up.  I’ve been doing some research and contacting some people.  Yes, I need a service dog, and yes, the best dog for the job is Puzzle.  Even if/after It goes away, I still need her…deperately…just to get out of the house right now, and will always need her.  This is long, long overdue.  So Puzzle and I will begin a new life.  Even if she does not pass the Public Access Test (she is likely not to)….I have this all figured out.

It didn’t come today.  I have a terrible cold that scared It away.

I know what scared It away.  I binged last night.  And I binged tonight.  My head is killing me and I was depressed all day even though I didn’t get It.  My life is completely unmanageable.  Most days, I have It all day long.  I just don’t wan to go on.

The It Notebook: Tuesday, February 1, 2011

Sorry I’m so behind on this!  I’ll catch up!  Soon!

Further adventures with It

Tuesday, February 1, 2011

I seem to have woken up with the physical sensations of It but not the mental confusion.  I dressed with ease and waited for it to get light out enough to give Puzzle her walk.  Unfortunately, confusion set in, and I knew Puzzle would have to wait.  My current rule is that I must be able to read and understand THOROUGHLY a paragraph of printed text.  This morning I made sure I understood an e-mail.  I have since changed this rule: I must fully understand four or five sentences (paragraphs can be too long) of a writer such as Hemingway.  No, I do not have to understand any deeper meaning or metaphor or symbol, only what is happening and what is being literally described.  Not Borges.  Not James Joyce.  Something straightforward.  And not tiny print, which is too difficult for me.  So I will do the “reading test” ever time just prior to Puzzle’s walks to be absolutely, 100% certain that my head is very, very clear, and if it is not, Puzzle will have to wait.  I worked all this out prior to leaving the hospital: she can effortlessly go 18 hours without peeing.  She I walk her late in the evening in case I am not clear at our usual walk time in the morning.  Today is the first day that she has had to wait.  Hopefully, this won’t happen too often.  I was able to walk her at 9:45, not at all unreasonable.  And Puzzle, dearest, completely understood, and forgave me.

NOTE: Looking over my records, I note that it is in fact the second day.  I suspect there will be more.