Sunday Evening

 

To be strong to be strong to be very very strong to not need to call up your friends in the middle of the night to not call your mom to not wake up your husband or call 988 in the dead dark of night to not have the darkness gripping your skull like a migraine caused by two men in the mall who made the hairs on your arms stand up in fear like the fear you have during panic attacks to not have the fear to not be afraid in the bright light of morning mornings glitter like stars rushing around your eyes when you stand up too fast because you're getting old to not fear growing old to be strong enough not to need anyone anywhere does strength equal lack of fear to not fear being alone gritting your stained teeth yellow as the sunshine reminding you of all you're missing out on

HealthyPlace and Beyond

 

Last August, I got an email that would change my life, and I am still dealing with the impact. HealthyPlace, the company I had blogged for during the last 10 years, let all of us paid bloggers go. I couldn’t believe it. It was the only meaningful work I’d ever done—I considered it my career.  I had no choice but to move on.

My blog—Creative Schizophrenia—didn’t pay much, even though I had gotten raises over the years. So, it didn’t seem like a huge sacrifice to blog on my own, without pay, for my personal blog, The Light in November. I created this site decades ago as a personal blog and morphed it into a place where I would post links to my HealthyPlace articles. Now it has become a sort of Creative Schizophrenia, Part Two. And you're reading it right now!

Part of my job at Creative Schizophrenia was to post videos on YouTube. I think I was pretty good at it, but I never liked doing it. So, I don’t make videos anymore.

Now I can do whatever I want. I enjoy using my own photos with the articles. But I often ask myself, is doing whatever I want good? I feel that my blog has gone from mental health advocacy to more self-expression about my mental illnesses, which are schizoaffective disorder and general anxiety disorder. Does that help people? Do I want to help people? Yes!

I mainly saw Creative Schizophrenia as artmaking. Of course, I was happy that people were helped by my writing and videos, but it wasn’t the main reason I did it. And now I’m writing poems about my misery in my new blog. Can I call myself a mental health advocate? But self-expression is advocacy, too–a call to people to give more credit to their creativity as part of healing. 

There must be something in me that wants to help people. My husband, Tom, and I raise funds every year for the NAMI (National Alliance on Mental Illness) Walk. And I regularly reach out to my congressional representatives to save Medicaid from the current cuts in the proposed federal budget, when I’m not even on Medicaid.

However, my writing about mental illness has always been for me. It hasn’t even been for money. It’s been for me with the hope of reaching others with insights that resonate for them as well. I actually do think some people get something for themselves out of The Light in November. If that’s you, don’t hesitate to share the links I post on social media, etc.

I know it’s selfish of me to be writing for myself. But that’s the freedom I’ve been given. And it’s a freedom I accept.

A Climb Too High--Stairs Cause Mental Stress

 

I underwent double knee replacement surgery for bone-on-bone arthritis in my knees about two years ago. Most everything was going fine–-I could walk again. I couldn’t run, jump, or sit on a floor (or in a bathtub, my preference for bathing), but I wasn’t in pain. I was starting to let myself breathe a sigh of relief for getting through the surgeries. Then something went terribly wrong.

I was visiting family in California this spring, and my brother’s house had a lot of stairs that I scaled frequently. I wasn’t used to stairs anymore. My husband, Tom, and I had moved from our second-floor apartment to an infinitely nicer first-floor condo. It’s great not having to deal with stairs, but when I do have to confront them, I can’t manage them as I once did.  I was hurting, and doctors determined I had a hairline fracture in my right knee, probably from climbing stairs again.

My knee surgeon prescribed wearing a sleeve over my right knee to keep it straight and allow the fracture to heal on its own. Okay, that stinks, but I’ll deal with it, and, as Tom said, at least it’s not a cast. If only that had been the whole story. But there’s more.

From shifting all my weight to my left knee and favoring it, a button on my left knee replacement popped out. This is very uncommon but doesn’t require repair-–unless it’s painful. And it was very painful, which isn’t always the case. So now, basically, both of my knees are messed up. And, if I continue to feel pain in my left knee, I might need another surgery, not a full knee replacement but still a repair.  

I feel very depressed about this. But my mom really understood what a toll this was taking on my schizoaffective disorder, even before I did, and she explained it to my doctors.

My mom and I took a trip to Door County, and I had thought the hated sleeve would ruin it, but actually the trip made wearing the sleeve more bearable. Also, before the trip, I talked to a priest at our parish because my usual reaction to things going wrong is to think God is punishing me. I trust him and he told me that God loves me and that He wasn’t punishing me, and that I am a talented, lovely person. This always compassionate priest encouraged me to keep using my talents. He knows me really well, and he owns one of my photographs. This is all to say that talking to him helped immensely. I had taken a hiatus from writing with all this going on, but his words inspired me to get back to it.

I told my therapist I’d talked to a priest, and she said it sounded like this was really helpful.

I was given Norco for the pain, but I’m trying to wean myself off of it before my current bottle runs out. I tried going off of it cold turkey, but that gave me a panic attack. I’ve already quit smoking and even light drinking… the last thing I need is another addiction.

I am also grateful for Tom, who has picked up the housework I’ve had to neglect and has proven himself adept at pushing me around in my wheelchair. I am surrounded by people who love me and whom I love. They say God is love. Maybe He (or She) really has been there all along.

Never Break

 

 

long-limbed

big red mouth

you’re no ballerina in a jewelry box

no, not you

tiara askew

smeared eyeliner

fake lashes falling off

you live to mock the candy-coated strait-

jacket of womanhood

that you will gloriously never break your

bones trying to fit into

I can hear your soul

in my car stereo

“I always wanted to die, but you kept me

here alive…”

 

Why are we still here, Courtney?

Maybe we never really wanted to die after

all

Maybe what we really want is for all the

electricity

all over the world to shut off

all the haters on the internet

all the loud and pompous TV personalities

all the top 40 hits

if they could just shut the hell off and shut

the hell up

you and I could have some peace

 

peace doesn’t come easy for people like us

 

you know what it’s like

to be made of fire

you know what it’s like

to burn and scream

you know what it’s like

to be a girl

coming of age sexually at a time when sex

could kill you

you know what it’s like

to feel ugly and betrayed

you know what it’s like

when all the great legendary men of

rock’n’roll don’t

 

I find peace

when I hear your voice

because you are made of fire

because you know what it’s like

because you remind me I am brave and

strong

and that no one

can break me

 

I wrote this poem about Courtney Love many years ago. I think it was around the time she was on VH1 Behind the Music, talking about her husband, Kurt Cobain’s, suicide in 1994. She cried and said, “It’s stupid. It’s stupid. Just live through the moment.” That quote, along with the fact that I have such loving people around me, has gotten me through many bad times. By the way, she is an amazing musician in her own right, you should check out her and her band Hole!

 

I'm No Longer Hearing Schizoaffective Voices

 

I wrote a lot about my schizoaffective voices when I was hearing them, but I haven’t written very much about what it’s like to no longer confront them. Let me tell you what it’s like to get beyond those auditory hallucinations.

I used to hear voices about once every two to three weeks. This started with my first psychotic episode back in 1998, in the middle of my sophomore year at the Rhode Island School of Design (RISD). For years after I moved back home to attend The School of the Art Institute of Chicago (SAIC), I saw a psychiatrist who refused to put me on a mood stabilizer because, for whatever reason, she was convinced I had schizophrenia and not schizoaffective disorder, a condition that is a combination of schizophrenia and bipolar disorder. Finally, after I graduated from SAIC and began working on my master’s degree at Columbia College Chicago, I switched to a psychiatrist who asked me if my “schizophrenia” was accompanied by mood swings. When I said yes, it was, she put me on a mood stabilizer with the updated diagnosis of schizoaffective disorder, bipolar type.

However, for many years, I was on too low a dosage of the new medication, so I still heard voices.  After a blood test showed how little of the medication was in my system, my doctor raised my mood stabilizer by a lot and I stopped hearing voices for good.

The change in dosage and symptoms came at the right time because, shortly after I stopped hearing voices, my beloved psychiatrist who had changed my life for the better retired and I started seeing my current psychiatric nurse practitioner. She wanted to cut back on my as-needed anti-anxiety medication, which I took when I was hearing voices and still take for anxiety. We compromised on that. I need the medication but not the long-term outcomes that can sometimes be associated with it.

It's been wonderful not hearing voices, as you can imagine even if you’ve never had the symptom yourself. However, I did hear voices when I was taking a narcotic painkiller after my knee replacement surgeries. They weren’t as bad as voices previously had been. They sounded as though someone in the other room had the TV on rather than feeling that my brain was levitating out of the top of my head. I didn’t feel light-headed. By the way, another brutal thing about being on the narcotic painkiller was that I couldn’t take my anti-anxiety medication while I was on it.

Hearing voices made me have to bail on a lot of outings. I’m mainly thinking about going to the Renaissance Faire with my husband, Tom. Now, however, my bad back and bad knees even after surgery make it hard for me to walk around the Renaissance Faire. Luckily, there are a lot of places to sit down. Tom claims my knees and back are worse than the voices were, but I disagree. I hate to admit this, but I was embarrassed and even, yes, ashamed when I heard voices in public. People can understand needing to sit down a lot. People are downright scared of you with the kind of panic you can display if you’re hearing voices. So that’s one reason why I had to bail when I was hearing voices in public places.

It sucks that I had to go through all that, but at least it’s over. I can’t help but feel that my voices have been replaced with bad knees and a bad back. I know I just said those things aren’t as bad as the auditory hallucinations, but they still make things very hard. Before I was cursed with my physical problems, I prayed to God that since I had a severe, debilitating mental illness, could I please not have anything else be wrong with me? I can’t help but feel like He just didn’t listen. 

Photo by Thomas Allen

Sometimes Beautiful

 

Sometimes

I like to run my fingers over

The scars on my legs

And the folds of fat on my back

Because, in so doing, I claim them

As mine

And as beautiful

(I’m scared of

All the things

I could’ve been)