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)

13th Quitversary: Schizoaffective and Smoke-Free

 

I’m schizoaffective, making me a likely smoker, but I quit smoking 13 years ago on March 11, 2012. Let me share with you how this schizoaffective quit the habit.

Looking back on it now, I’m particularly proud of this achievement because it’s something I did completely on my own. My Great Aunt Elsie was a big help, though, because she had quit smoking many years before, and she was my biggest cheerleader. I’m wearing a ring from her right now as I write this. (It’s not the Official Smoke-Free Ring or the Unofficial Smoke-Free Ring, both of which she gave me, because they don’t fit anymore. It is the Ultimate Aunt Elsie Ring with stones of many colors, though, so that counts for a lot!)

Another big cheerleader was my boss at the church office where I worked. She had quit smoking, but she had to go on oxygen anyway. She quit when she was 48. I quit when I was 32. She said she was my future if I didn’t quit. I watched lots of Center for Disease Control (CDC) videos about why people should quit smoking. I also drank lots of Cherry Coke and ate lots of cherry mentholated cough drops in the process. So, I wasn’t really concerned about weight gain. In fact, the best advice I can give anyone who wants to quit smoking is this: don’t worry about gaining weight. What is your priority–to be skinny in your coffin?

Another soother that helped was music. Music helps everything, and it helped me quit smoking. Especially the album Biophilia by Bjork, but also songs by folk singer/songwriter Laura Veirs, riot grrrl queen Kathleen Hanna’s project Le Tigre, and, of course, Tori Amos’ song “Spark” with the lyrics, “She’s addicted to nicotine patches…” I used nicotine patches to quit so the song resonated for me. I also used a book called The Complete Idiot’s Guide to Quitting Smoking by Lowell Kleinman. M.D., and Deborah Messina-Kleinman, M.P.H.

Seriously, if I can quit smoking, anyone can! I was so addicted to nicotine. I smoked two packs a day at my peak. And let me tell you something: I coped with my auditory hallucinations (or voices) by chain smoking. Smoking was a coping mechanism for everything. Got some bad news? Light a cigarette. Waiting for a phone call? Light a cigarette. Got the phone call? Light a cigarette. Feeling happy? Light a cigarette. And on and on. Writing this is actually making me want my coping mechanism back, but I know I wouldn’t like it anymore. I can’t stand the smell of second-hand smoke now!

I still heard voices for almost 10 years after I quit smoking. I switched to drinking decaf coffee for a while, and then to drinking ice cold water and, if I was at home (or had my noise cancelling headphones handy), listening to relaxing music, like that by my girl Tori Amos or Brian Eno, or watching a relaxing movie. My favorites included a chilled out, intimate Tori Amos concert and the Disney/Pixar film Brave. Maybe sometimes I just need a feisty redheaded lass to help me get grounded--and both Tori and Merida have red hair. It remained a must to take some of my as-needed antianxiety medication to help me calm down. At any rate, a medication change of my mood stabilizer a few years ago stopped the voices for good. For some reason my mood stabilizer works for that but my antipsychotic doesn’t as much.

Three-and-a-half years after I quit, my husband, Tom, bought me a leather Pandora charm bracelet from which dangled a silver number four for my fourth anniversary smoke-free. That evolved into a rose gold bracelet with lots of charms on it. I wear it every day I go out. (Some days I never leave the condo we live in, but that’s another story.) As of this writing, we’re going to Pandora next weekend to get another charm for my rose gold Smoke-Free Bracelet. Each charm on it marks another year since I quit smoking. I called it my Quitting Smoking Bracelet for years after I quit, and a year or so ago I finally started calling it my Smoke-Free Bracelet. Just like I did with the rings from Aunt Elsie. Because I’m not quitting. I quit years ago, now. I am Smoke-Free.