Wednesday, May 24, 2017

How Music Saved Me

I have always depended on music to keep me grounded. When I was younger I listened to calm, quiet music. I was a huge fan of Mannheim Steamroller, Yanni (go ahead and laugh), Enya, and other meditation-friendly artists. Later I got into Led Zepplin and '80s rock - Metallica, Def Leppard, and other such bands. I still steered toward the slower, ballad-type songs. I needed things calm and collected to keep my mind in check.

In mid 2012 I started to break. And I mean a MAJOR break. And my taste in music changed. The slower, quieter music didn't work any more. My mind was so loud and chaotic, it just provided a quiet "room" for the colors and voices to bounce around in. I started listening to louder music, even some rap, which I had abhorred up until then. My mind continued to shatter and everything got louder and even more chaotic. I had zero control over the voices; my only option was to drown them out.

And physically I was breaking as well. I didn't know what it was at the time, but I developed chostochondritis in which the connective tissue in the rib cage becomes inflamed. Every day at work was agony as I lifted and filed and sat in a computer chair. And I could "hear" what people were thinking about me, and it wasn't pleasant. Often these voices were louder than the real ones and I was having trouble telling them apart. finally, on September 26, 2012, I left work in the middle of the day and I was never able to go back. I was in pain, physically and mentally, and I couldn't take it any more.

I had no way to pay rent. My roommate had moved out. I had tentative plans to move in with my parents, but the thought of packing was as terrifying as the thought of going back to work. For the first time in more than a decade I had serious thoughts of suicide. I even had a plan, but fortunately that plan needed preparation so I had a couple of days before I could die.

And that was when I heard the song, the one that saved my life. I was listening to Pandora on my computer and Linkin Park's song "Crawling" came on. It was loud and harsh and made the noise in my head fade just enough for me to hear the lyrics:
There's something inside me
That pulls beneath the surface
Consuming, confusing
This lack of self control I fear
Is never ending, controlling
Crawling in my skin
These wounds they will not heal
Fear is how I fall
Confusing what is real
Those words said exactly what I was feeling. And for the first time I knew, I was absolutely sure, that someone out there was going through what I was. Instead of going through with my plan to kill myself, I sent a message to a friend I knew in the psychiatric community and asked her if she knew anyone in the area who specialized in schizophrenia. She directed me to Dr. Nielsen, who has been my psychiatrist ever since.

My favorite band now is Linkin Park. So many of their music has lyrics that speak to my soul. And despite being on meds now that quiet my mind, I still prefer the loud, harsh, almost grating music that saved me almost 5 years ago.

You can find a list of some of my favorite songs on my YouTube channel. The list is always growing, of course. And if you don't like loud music you can always look up the lyrics. Meaningful lyrics are an absolute must to make my Favorites list.

Music, no matter what sound you prefer, is a powerful too in fighting mental illness. If you haven't found something that works for you, keep looking. There is literally a world of tunes out there.

Sunday, May 14, 2017

Holiday angst

I have no idea why holidays of any kind always make me anxious. But then I've never really understood why my brain does what it does.

Mother's Day is kind of easy to figure out. I was raised LDS and I live in Utah and I never had children. No matter how much time passes or how much therapy I have, Mother's Day still triggers that ingrained belief that a woman's purpose is to have and raise children. Year after year - even though I get holiday wishes from nieces and nephews and siblings and friends - I still feel like I'm standing outside the gates of a party I should have been invited to but wasn't.

And then there is my relationship with my own mother. It is great, but I live with my parents so I'm always here. Yes, I tell her I love her and I give her a card and get her a gift and all of that, but it doesn't seem to me that it brings the same smile to her face as getting something in the mail or getting a phone call. I know I'm probably imagining it. I know she loves me just as much as my brother and sisters, but on holidays it seems less. And I have to hear about how sad she is that there were no cards in the mail and no one had called. I feel responsible somehow for the fact that she hasn't heard from anyone else. I end up texting my siblings to tell them to call her just so I don't have to see her mope. It is completely unnecessary, I'm sure. But I can't help feeling responsible for whether my mom is happy or not. I end up sitting in the same room as her no matter what she is doing. I sat on the couch for close to an hour just listening to her side of conversations with two of my sisters. I couldn't watch TV because she was on the phone, but I didn't dare leave the room and watch something in my room because it's her holiday and we're supposed to spend it together. By the end of it I was so agitated I could barely sit still.

I am very fortunate to still have my mom here to hug. And given my wonderful smorgasbord of genetic illnesses it is a good thing that I ended up being infertile. But Mother's Day still leaves me anxious and depressed.

Wednesday, May 3, 2017

My hospital stay never happened

I was hospitalized for 7 days this past March – and it never happened.

Here is a little bit of background: I am 45 years old and I have schizophrenia. To be specific, I have schizoaffective disorder-bipolar type combined with clinical depression and generalized anxiety disorder. I work very hard to stay as stable as I can. I take my medications despite a paranoia about pills being poison. I keep my regular appointments with my psychiatrist, my therapist, and my general practitioner. On good days I can drive and go meet someone for coffee. On bad days it is an accomplishment just to get dressed and feed myself. If I am lucky, I have more good days than bad.

Sometimes, despite all my attempts to stay stable, I have very bad days. I was having a bad day and one of my stronger delusions started to take over. I was able to recognize that it was getting too bad for me to handle and my mom got me to the ER just in time for it to blow up into full psychosis. I was given emergency medications to calm me down and I was admitted to the Behavioral Medicine Department.

And this is where I disappear. You see, the so-called Behavior Medicine Department (B-Med for short) is really the short-stay psychiatric lockdown ward. And you are invisible to the outside world. No one – not even doctors – can call in or even know you are there unless they have a code. All records are kept separate from other medical records. It is an isolated bubble designed to keep the patients calm and get them the specific treatment they need. It really does work, and I left a week later with my medications tweaked and my mind back under my control.

A few weeks later I had a regular appointment with my general practitioner. They had no record of the change in my medications, which was strange. I got the records updated and then waited to see the doctor. We talked about a few things and then I mentioned that my anxiety was still up after the hospital stay, but I was working on it. And he had no idea what I was talking about. He checked my patient records and all it had was the ER visit. Then I mentioned that the stay had been in B-Med and he just nodded. Psychiatric hospital stays, he said, are never put in general patient records. They are kept separate and he had no access. And he was not allowed to add anything about it to the record, even though we were talking about it in our visit.

Let’s think about that for a moment. My general practitioner has no access to my psychiatric treatment records. The fear of someone finding out I have a mental illness and was treated for it in the hospital is so strong that my own doctor can’t know about it.

During Mental Health Month there is a lot of talk about breaking the stigma surrounding mental illness. Well, there is a long way to go. If they can’t even talk about it between doctors, how are we going to talk about it in public? How are we going to get integrated health care if my hospital visit essentially never happened?

I have schizophrenia. I want all of my health care providers to know that. And so should anyone else with a mental illness.