Journal from Late March

It’s hard facing the truth; that I might actually need to be in a place like this.  I daydream about a day when my illness doesn’t govern my life.  Just to imagine being on a medicine that always works and not having to warn people about what to expect; that I can be normal all the time and have healthy relationships.  It’s unbelievably embarrassing to look at someone you respect and tell them that you will soon lose control.  When they find out the person they thought you were, isn’t you at all.  So many of them put you on this pedestal and act like you were too good to be true when you fall short.  So short…

When I was nineteen years old I got drunk and confessed to the guy I was dating that my father was schizophrenic and that I was having hallucinations.  My friend Nathan from work was there too.  He heard me say these things but, unlike the guy I was dating, he didn’t run for the hills.  Nathan is my best friend now; the only friend I have left, the only friend I don’t have to take care of.  When a friend of Nathan and I’s asked him (unprompted by me) if he thought he and I should be lovers he said that he knew if we got involved he wouldn’t be able to focus on anything else.  It’s refreshing to get such honesty, such logic from another human being.  I just wish I could find someone else, a friend, lover, or even support person, that would accept me as crazy.  I wish there was someone else I don’t have to dress it up for.  I wish I didn’t have to guard myself by spouting off information.  I wish, I wish, I wish…

I waited until my early twenties to be diagnosed with more than I had been dreading since I was a child.  At ten years old I found out my father was a paranoid schizophrenic and I did as much research as I could to find out if I would possibly inherit the disorder.  With the amount of research I did even at ten I knew that I could someday be as odd and as crazy as my father.  Not to mention the resentment I felt towards my mother for leaving someone so sick.  When I found out my mom had a mental illness as well I tried hard to forgive her, to no avail.

I try, unsuccessfully, to stay healthy.  As I got over the stage of thinking I didn’t need my meds, I began trying something new:  Doing everything right.  I took my meds at the same time every day, I exercised, I watched my diet, no drugs (which had been my policy all along), no alcohol.  I continued on that path until, time after time, I ended up back in the hospital.  With every hospitalization it became clearer and clearer that what I was doing was having no bearing on whether or not I got sick again.  I gained weight and I had bad side effects from my meds.  I kept making it to the same place:  The hospital.  And even when they decided to put me in placement I stayed normal for awhile and then I would swing one way or the other, until I was normal (or they perceived me to be) just long enough for them to let me go.

It was also becoming clearer and clearer that I was unable to work or go to school.  It was a never ending cycle.  I would start work or school, but as soon as my symptoms made it too hard for me to be able to function I would have to call in or put off the work.  Every time I didn’t go to work or didn’t complete an assignment I would start to feel guilty and I would slide further down.  Again I would hit bottom and the cycle would begin again.  Even after volunteering, trying to make myself useful, I ended up not being able to move from the couch as I slid into a deep depression. 

I have accepted that taking medication will be a daily ritual for the rest of my life.  I’m starting to face the fact that none of them will work for long and will consistently need to be changed.  I still hold out a glimmer of hope that I will find a medication that will work forever.  Other people have this luxury.  It would only be fair for me to have it too.  But fair life is not and my glimmer of hope is slowly fading with each med change.

With each medication I expect side effects.  My favorite is not being able to eat.  I’ve had stomach problems since I was in high school and it seems to creep up on me when I start taking some new-to-me meds.  Usually this is accompanied by feeling the need to spit my food out.  I don’t really want to, I just physically feel like I should.  I tend to find foods that I can manage to stomach and try to eat them when I can.  While some may think it’s a great way to lose weight and shouldn’t take for granted, it’s really miserable.  Just one more thing you lose control of.

My second favorite is weight gain, everyone’s favorite I think.  The antipsychotic/mood stabilizer that seems to work best for me has caused me to gain sixty pounds.  I used to be a cute little thing (I have the pictures to prove it) and now I’m a short little blob.  And, because of the rapid weight gain, even though I’ve never been pregnant, I do have stretch marks.

Speaking of being pregnant, I never will be.  I don’t think that anyone should base their decision to (or to not) have children on mine.  Having babies is a deeply personal issue.  It seemed less of one to me before I fell in love with a little girl named Sydney.  She is my mother’s soon-to-be ex-husband’s granddaughter.  She is a beautiful little girl, full of energy and so smart.  I met her when she was a year and a half old and spent a lot of time babysitting her and just spending time with her.  A situation caused me not to be able to see her hardly at all and my heart was broken.  It shattered when in an email her father said that he would never allow me to watch her overnight or for an extended period of time.  He gave the reason that when I would take my medications she was not safe with me.

Before I spent time teaching her new things and giggling with her I didn’t really think about having children.  I was hurt by his accusations, but it got me thinking about whether or not I would be a fit parent if I were to have a child of my own.  After pushing aside the hurt and looking at the whole picture I knew what I had to do.  In December of 2010 I had a tubal ligation, a procedure to make me sterile.  I am still grieving everything I gave up.  Most people who can have children only think about my not being able to have a baby.  I think about not being able to feel my child grow inside me and feeling their heart beat and kicks from inside my belly.  I think about not being able stare at them through the hospital’s nursery window.  I think about not being able to hold their tiny hand and feeling their grip.  I think about not being able to teach them their ABC’s and how to tie their shoes.  I think about not being able to see me in their face and helping them learn right and wrong.  I think about how without children, I will have no grandchildren to spoil.  I think about how adoption agencies don’t give babies to crazy people.

In an effort to soothe myself while I go through a long grieving process, I remind myself of my reason for making that decision; I can’t stop taking medication for nine months while I’m pregnant, I hardly want to impose dealing with me, having my illness, on people who are willing and I especially will not impose me as a burden on my child, I am not willing to pass along a strong predisposition for mental illness, not to mention the selfish reasoning that I cannot watch my child go through what I have, and, lastly, I don’t know if I could make it through making the right decision, if I were to accidently become pregnant, to have an abortion.  Why, you ask, does it have to be permanent?  I answer with two very good reasons; they are not going to cure schizophrenia in the next fifteen years (hell, they not even really sure what causes it), and because when I am manic I make bad decisions, for example, possibly having my birth control removed and becoming pregnant.  While there are slim chances that even with my surgery I could become pregnant, well…they’re slim.

While I’m listing the problems with being crazy, I’ll add one more:  Men.  Men want what we all want, someone who’s attractive with little to no baggage, who can give them a family.  Might as well cross all three of them off for me.  I’m overweight, have enough baggage you need a semi to pull it, and I’m not able to have children by my own decision.  It seems that men who are willing to accept these things are not the men I’m looking for.  I seem to find men who are attractive ok, but if they are (or think they are) willing to accept all the problems with me they definitely have baggage (and more than I can carry).  And if they are ok with me not having kids they usually already have some.  That is something I simply can’t deal with.

The feelings I have about being schizoaffective are neatly tucked away in these pages.  It’s exhausting, going from one extreme to the other, over and over again.  Trying to figure out what to say to people, how to explain, well, everything.