Guest Post by Joseph S. Fusaro
Edit and Post Design by Christy Zigweid
Picture made using @WordSwagApp
It was the spring of 2013. It had been 3 years since my last psych inpatient stay for schizoaffective and general anxiety disorder and to this day, I still say my symptoms were from excessive cigarettes, Adderall, benzos, and the 6-10 joints I was smoking a day. I never had a problem with any of these meds before, but after 2 years, they stopped working and I would go from ADHD and general anxiety straight into psychotic and schizophrenic episodes.
But, before I get into 2013, I need to explain what happened after my last inpatient stay in 2010. Held against my will for over a month and a half, I learned the hard way that sarcasm mixed with psychosis is really a bad idea in urgent care; a sentence of 45+ days and a monthly shot of Haldol is what one gets for not being compliant. I could not stand the fighting, the older lady defecating on the floor in her room for fun, the nightly argument of what terrible 1980’s movie would be played, the medication line, the bedtime, and the patronizing of patients from the guards and nurses aids. I hated that they gave me a handful of downers and then told me I could not sleep during the day. I would skip out of every group activity and the guard would open my door, knock, and tell me to wake up, then stare at me while he or she feverishly took notes on my current state to give my doctor.
I was so exhausted I knew I had to comply because I never wanted to go back there.
After this stay, even though I started to make up with friends and family and being a little more social (I was now getting out once a month instead of once a year), I was prescribed a month long injection of Haldol which was literally stealing the life and soul from my body. (I later found out from a drug rep at a NAMI event that Haldol was a drug from the 1950’s and they only give it to people in the public hospitals that have no money. He said it was outdated and dangerous). I could not eat. I could not think. My muscles were spastic and twitchy, and I know that I was at the beginning stages tardive dyskinesia, even though my psychiatrist denied it. He would stare right at his notepad, never my eyes, and say, “You are still shaking, but that is normal.” I would think, “Well doc, I felt a hell of a lot better when I was on anything except this garbage in a vile.”
Every time I went to a psychologist I would tell him that I am one bullet or handful of pills away from death. I was numb and in serious physical and mental pain from the Haldol. I could not socialize. I had major, major depression that he was ignoring. I guess, in his eyes, as long as I was not psychotic, we were winning this health war, but I felt very different. I had to make a change. I had to make a change myself because there were too many people making decisions about my life. There were too many outside sources ripping the book that was my life apart.
I finally could not take it anymore and in the winter of 2012, I made a decision which looking back now, may have saved my life.
I decided to find another psychiatrist. I told him the whole truth of exactly how I felt every moment of every day; how extremely depressed I was, how much trouble I was having thinking and focusing, and how I needed something to help me sleep at night. I conveniently left out my other psychiatrist and the medication I’d been on. I believed in my sick and tired mind, this new doctor would prescribe me things to balance or offset the garbage my original doctor was forcing me to take. And, to my amazement, it worked. The new doctor prescribed me Adderall (a lot of Adderall I must say). I also got my best friends Xanax and Clonopin back. This felt like Christmas. I filled my prescriptions right away and before I even left the pharmacy, I had 40 milligrams of Adderall sliding happily down my little throat. I swear before they even hit my happy stomach I knew this was going to work. The Adderall was going to counteract the Haldol and I was going to be free again. Well, at least until they stopped working again, which after a year or two of overdoing it, they always stop working.
While this was not a cure-all, just a Band-Aid over a Band-Aid over a 30-year-old bleeding infection, I was feeling okay for a short time. I was still far from healthy, but it got me out of bed every day. It started going to family events and hanging out with friends. For a year or so I thought I had found the answer to my mental illnesses.
I thought that I was finally on the ever so famous and glorious “road to recovery.”
While I was more active and social, there was one issue holding me back. I could only be around people or hold conversations for a maximum of 2 hours. After this, I would lose all interest and focus and my brain would start to take a launch into space. While I had to keep my visits with others short, the more I went out, the longer my visits became.
When I had to go to a family wedding in Florida, things started to take a nasty turn. I was extremely nervous. I had not been on a vacation or a plane in years. I had not seen my family or been around people for more than a couple hours in years. In my mind, there was only one way to power through all of these strong emotions and that was with Adderall and benzos. What I have learned time and time again with this combo is that: 1. It only works if you can keep them to minimal dosages and 2. You cannot take them at the same time or alternate them (Adderall is for days and benzos are for nights). So yeah, I totally abandoned that theory for my trip. Coincidentally, the drugs then abandoned me.
Somehow I made it through the trip, but my sleep schedule got completely screwed up. From the moment I got home and laid on my couch, I knew I was entering a bad phase. When I was just about to fall asleep, I had a dream that someone was whispering in my ear and I knew that the lack of sleep caused the racing thoughts and nightmares to begin again. Now it was just a matter of damage control for me. Could I keep this from becoming mania or psychosis? I knew if I just took my Seroquel every night I would pull through. What I did not calculate was that if I was taking between 40-100 milligrams of Adderall every day I was going to need a lot more Seroquel.
I was a mess and didn’t have any answers, but was not ready to admit defeat.
Days started going extremely fast. I would wake up at 7 or 8 am and take an Adderall, then I would go back to sleep for a couple of hours and wake up at 11 am or so in pain. The only thing that eased my pain was another Adderall. I used to always know when mania was starting because I would write with vigor. I wasn’t writing poetry, prose, an article, or even thoughts, just my opinions on anything and everything. I could connect the dots to anything. I could tell you why the sun came up. I could tell you why I fell off my bike when I was 7. I could tell you why birds lay eggs. Then I could tell you that all 3 topics were scientifically connected…via the power of God. I was working on a book that I called Loose Associations, which if I ever decide to put it together and release it will probably only make sense to 1% of the 1% of people that live with schizophrenia. I did not have these psychotic symptoms all the time, but I can assure you for my stints of psychosis I was not even in this galaxy. I lived in a world of telepathy gone mad. I lived in a world of nuclear war gone everywhere; friends were at war with friends, and family was at war with family. I was on the lookout for it 24/7 and hiding from it any way I could. I thought that alone, I was chosen out of every person in the world to fight and end this war so that the “regular people” did not have to be bothered. I thought that I was named Commander and Chief, then given a sword and horse. All of the Justices, Presidents, Prime Ministers, Kings, and Queens looked at me and said, “We need you, Joseph. God speed, kid,” and sent me off to save the world. I later found out while I was in my internal war that I had scared the life out of everyone; my family, friends, doctors, and pharmacists.
After an all-night battle with myself, I walked out of my room at 1 pm and decided I was going to take the day off and watch a Mets game for the first time in a few days. Wait, it was the last day in June? I had not sat down to watch a game in over a month? I did not have any proof but I could sense that one of my friends had told my family that I was a mess and it was only a matter of time before my family called the police on me.
I knew what was coming. I needed to leave and get out of here now. Was there any way I could get from my house to the airport without anyone noticing? I checked my Twitter app and what I saw was my latest post was at 4:15 am. It had happened again, my mind had won again. I left an embarrassing trail of every thought that crossed my mind (which I thought were kept on my private on my public profile) and every battle I’d fought. I’d left thumbprints of every moment, fear, and illness via likes and posts. I can distinctly remember the few random replies from people who wanted to start a political or racial war with me. They had no idea that I was fighting this war and disease internally. They had no idea I was in shock and awe of the things I was reading, watching on the news, and thinking. They had no idea I was fighting a war for peace. My tone was that of fear, not anger or rebellion.
I could sense my what-had-become-routine-pickup-by-the-police coming every time. You’d think I would have known by now that when I started to sense someone was going to call my doctor or police behind my back, I would stop taking the controlled substances that made me walk around my house talking a mile a minute to the air. And when I heard the siren, I sighed, knowing what was coming. My heart and cheek bones swelled up with emotions. I could feel the air around me thicken, and I slowly started to drown in the embarrassment and anxiety. I’d done it again; blamed everyone else for my addictions and dependence. The officer knocked and said, “Hey Joe, can you come outside with me for a second? I just want to talk. I promise no one is going to take you from your home.” (They always make you go outside for their safety. I knew that he was lying. He came here with one intention and that was to take me from my home to the home). At that point, I could deal with one more embarrassment for the sake of my well-being. I tried desperately to stutter my way out of it for a few minutes and he became impatient. But, this time, I was given an option: “You can come gracefully with me or we can call an ambulance and strap you down. Joe please, just walk with me.” So I did. I gave up.
All I could think was that I had let everyone down again and the next week to a month was going to be the same pain from a few years ago that I thought I was done with. It was going to hurt so much. I was going to be so sick. And on this Independence Day, I was surely guaranteed to be alone and far from free.
That Independence Day hospital stay was my last and from that day forward, I have stayed sober and reduced my meds down to just Seroquel for sleep. For some strange reason or by the grace of some force that is stronger than me, I found a great doctor in 2013. He was the first doctor that I could tell had faith in me. He encouraged me to tell my family and friends how I truly feel and to try and repair my relationships. He taught me breathing exercises and self-compassion. He taught me about eating healthy and getting sufficient rest. He not only prescribed me medication but he made me believe in me, which is something I wish a doctor would have taught that six-year-old kid with depression.
As of 2014, I can feel the change of seasons again. Holidays feel like special days again. I have friends and family I can call if I am having a bad (or even a good) day. Now that I am focused on the right things I am finding that I attract more of the right people and the right lessons. I can honestly say for the first time since I was a kid, that I am happy. Every once in a while I still feel a little behind the game when all of my friends are getting married and having children, but I know that I have been so patient for so long that if I keep the right attitude good things will happen. I now know that I cannot search tirelessly for patience, peace, or love to add to my life because I already have it. I just take a deep breath, smile, and think, yes I am happy, but I am not done yet.
I may have lost everything but I did gain one thing: I have a constant desire to spread a positive message that there is hope for those with mental illness. There is no reason to feel ashamed and you are not alone. This is all I have and I am making it my responsibility to shine a light on mental health.
About the Author
Is my heart a muscle that is tucked neatly behind flesh and bone, or is it the space within in me growing larger than the skin that once encased it, reaching out towards the world with each new experience of love? I say the latter. My heart is expanding, reaching out to greet you.
I tried texting my husband over and over again. I pressed three on my contact list and his phone rang. He wouldn’t pick up. I heard the key in the door, and I said, “Oh no! We need milk and I tried to catch you before you made it home.”
“Let’s go” he said.
I put my shoes on, he locked the door, and we walked the four blocks to the little market.
When we walked in, there was a disheveled woman getting a cup of coffee. My husband said hello to her, and she turned to him and smiled. I headed for the refrigerator to get a half gallon of milk. My husband was still talking to the woman who I knew was homeless, because I figured out how my husband knew her. She is a guest at the soup kitchen where my husband volunteers on Fridays.
My husband always speaks to the men who work at the store. They exchange formalities in Arabic. The man behind the counter asked, “You know her?” tossing his head in the direction of the woman who stood a short distance away from the counter sipping her coffee.
“Yes. I do.”
My husband turned to the woman and said, “Michelle, I will buy you your coffee.”
The man who was working the cash register said, “You know she is homeless, don’t you? She is homeless and she buys the most expensive water. She buys the French stuff” he said with obvious disdain.
My husband said that yes, he knew her.
The man at the counter said with sarcasm, “Why don’t you give her a room at your house if you like her so much?”
At the same time, Michelle, who heard my husband say he would buy her the cup of coffee was whispering, “There are good people in the world. There are good people in the world.”
As we walked out, my husband said, “Will I see you tomorrow, Michelle?
She smiled and said, “Yes. Thank you”
On the way home my husband said, “I’m fairly certain that Michelle has schizophrenia. She talks to voices a lot. She is also very fearful. We watch out for her on Fridays.”
I said, “I can’t believe that man! I don’t care if she buys the “French water” it is probably the only luxury she has. She needs to feel human too.”
My heart broke as I listened to the man behind the counter criticize Michelle as if she wasn’t standing there.
My heart grew in the store as I watched my husband treat someone who has so little the same way he would treat a friend.
When we got home my husband said, “Michelle couldn’t stay with us even if we brought her here. She is just too fearful of other people.”
What was said in sarcasm became a consideration for my husband. He thought about it, if only briefly. I know if it were a different world, he’d bring her home.
If you could see me, you would know my heart broke open in that store to make room for it to grow again. It’s so large now, it’s close to you. Reach out, and I’m sure you can touch it.
Rebecca Chamaa has been published on Yahoo Health, The Mighty, Role Reboot, Manifest Station, and others. She blogs daily about living with paranoid schizophrenia at http://www.ajourneywithyou.com
Olympian Suzy Favor Hamilton - From Fame to Prostitution to Advocacy
Hall of Fame Basketball Star Chamique Holdsclaw on Mental Resilience
Diana Nightingale on her husband Earl Nightingale's Principles for Mental Health Success
JoAnn Buttaro on Date Rape & PTSD Survival
Story: Its Never Too Late
Gabe Howard on BiPolar Advocacy
Phil Fulmer on Teen Suicide
Prison, Bipolar and Mania with Andy Behrman
Columbia Univeristy's Dr. Rynn on OCD