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Shackles No More!
Hi, My name is Jeff Daigle and I have co-occurring disorders, schizophrenia, depression and alcoholism. I am going to concentrate on my mental illnesses, but I have found that I need to treat all three disorders at the same time to be successful. I grew up near the western mountains of Maine, in the town of Mexico. Living close to the Catholic Church I walked to church every Sunday. I went to the Catholic school for the first grade. I liked to go to church. I always sat in the front row. I was baptized in the church and had first communion, but I was not confirmed. When I was ten years old my family moved, which caused me such anxiety that I was sent to my Grandparents during the move. It was now too far for me to walk to church. My parents gave me rides for the first few months. Giving me rides got old quickly. I stopped going to church except for weddings and funerals even though I always wanted God in my life. When I was in High School, I should have started confirmation classes, but I was smoking pot on the riverbank with my friends instead. I had already started drinking alcohol. I just barely passed high school because of drinking and drugs. After high school I moved from Mexico to Biddeford. Things started to happen. I started to hear voices when I was in my late teens. There were many kinds of voices. The scariest were the ones I heard at night; they told me to kill myself. I tried twice. Thanks to God it did not happen. I would search my apartment, going from room to room to find the people doing the talking. I did not find anyone. I said to my self, “I will get them.” I could hear other voices through the wall. They would talk about me and my relationships. I would quietly go to my door, open it quickly to catch them. I never could! I thought they were quick at hiding so I tried looking through the keyhole. I thought of calling the cops, but the people in the hall would just hide from them. Besides, the cops were in on it, too. The voices in the daytime would tell me to push people in the grocery store that were bent over. So I stopped going to the store; I would send my roommate. The voices also told me to push people into traffic. I didn’t do those things, and I would like you to know that people with mental illness are more likely to harm themselves than others. In my case I just cried. Then everyone would look at me and walk away; I left the full cart of groceries and left the store. At that time of my life I cried at the drop of a hat. I thought the devil and God were fighting over me. Ironically, my job recently was to help a blind lady avoid traffic and I help her shop and buy groceries at the store. At this time I would get “double meanings”. People would talk to me and I would think they were trying to send me secret messages into my mind by their words and gestures. The double meanings were worse at work when my boss gave me detailed instructions on what to do, like to set up a concrete form in a certain shape. I would just start crying because the double meaning usually meant I was bad and evil. I couldn’t ask questions because I thought it would endanger my soul and theirs. This was very embarrassing in front of my co-workers and friends. I thought people talked in double meanings so the devil couldn’t understand what we were really talking about. I was angry with God for letting this happen. Another time I thought I was Jesus Christ. I would do things like go to the roof of the construction site and lay out like I was Jesus on the Cross. I wondered why people walking by didn’t kneel – after all I was Jesus! Then I thought that this meant they were going to hell. I would go to the phone booth on the corner pick up the receiver and started to talk and look around to see if any one was watching me. I thought there was, so I would talk into the phone as if I was 007. Before I parked my car for the night I would go around the block to see if anyone was following me. I would do things like turn my left blinker on but turn right. I thought that everyone heard voices and the voices were just part of growing up. But you people just didn’t talk about them. I learned as a kid, you don’t talk about your feelings and what was going on inside which made it difficult for family and friends to detect my schizophrenia. When my older brother had just gotten out of the armed forces I remember writing a paper for him talking about his unusual behavior. He had been diagnosed with schizophrenia but I didn’t really know what schizophrenia was. I just thought he was weird. I was already drinking alcoholically and couldn’t have understood anyway. At age 19 I was living in Biddeford and had a job in Scarborough, no wheels and it was a three-hour walk. I had to leave the house by 4 AM in case I didn’t get a ride. I would hitchhike until the police caught me, but I did it anyways. I got a ride from a clergyman, from a radio evangelist, from a pervert, and then from a very attractive woman who told me that she could give me daily rides for a small amount of gas money. This went on for several weeks; we would talk about God, Jesus and the Bible. Like I had said before, I was always searching for God, and I thought I had found Him through her, as well as a girlfriend. One morning she invited me to her house for a prayer meeting that night, which I thought was a good idea, but I was very nervous. I did the only thing I knew how to do to relax, I drank a six-pack and smoked several joints. They knew as soon as I got in the car. The prayer meeting was torture, I was so nervous and sweaty. I shared that I was a thief, and they showed me in the Bible where it said, “Thou shall not steal.” In this period of time a lot of strange things happened. I was 20 and in this cult we were supposed to learn to speak in tongues. I had a hard time during practice because as others spoke, they were saying what I had just thought and it seemed as though they were reading my mind. I thought that life was like a softball game and I was a prisoner. I was watching TV and the commentator for the news said that a prisoner at a certain jail was playing softball and went to catch a foul ball, caught the ball and kept running. For me I thought that I was the ballplayer and the foul ball was a test from God. I got the ball, it was foul, and I kept running. I thought that I was running from God and I was evil. I didn’t have many friends, one or two. Once I was at a friend’s house, he was surfing the TV, this was back before remotes he would turn the dial and I would hear a word or two of the audio then he would change the channel again, and I would hear another word or two and then he repeated it. To me all the words from the different channels made sense and completed a thought. The message usually meant I was evil and not deserving of God’s love. As I said I thought I was a tool of the devil. One time I was cooking I think it was a cake or something. My Mother taught me to break an egg in a small bowl before putting it into the dry mix. I took an egg and hit it on the little bowl and the bowl broke. I felt the devil was at work here. I cried and prayed to God. Another time I was working inside a boiler 37 feet in the air and a light bulb blew out. I took the bulb and told my helper, “Watch this.” I dropped the light bulb and it fell 37 feet onto solid steel and didn’t break. I heard my helper say, “That’s a sign of the devil”. I believed him. Recently I asked my psychiatrist about the egg, bowl and the light bulb. Dr. Suzuki said it wasn’t whether the bowl and the light bulb broke or not, it was the power that I gave them. The voices were getting worse and my drinking started getting heavier. I discovered that if I had enough alcohol to drink I didn’t hear the voices. I didn’t know at the time I was self-medicating with the alcohol. The problem with that kind of self-medication is that it works! But then you have to deal with the alcoholism. Another thing I did was when I was at somebody’s house I would look at the way things were displayed like knickknacks on the mantelpiece, the book self or the coffee table. They would send me a message. Usually the message would be that I was bad. So I would rearrange them so the message would be OK with me. But I had to do this with out getting caught. Do you know how hard it is to get someone to go into the kitchen so you can rearrange the knickknacks in the living room? If I did get caught I would say things like “Oh, you dust often.” or “You should dust more often.” I could not hold a job at this point; I had tried several jobs. I had no money so I moved back home with my parents. I was still self-medicating with alcohol. One day in 1987 I woke up and something told me it was time to get sober. I ended up at Tri-Country Mental Health Services. They said that maybe I needed a detox, so I went. I talked to the counselor at the detox about the idea that I was evil and I thought that the devil was going to get me. He said that I should go to an alcohol and drug rehabilitation center, or “rehab.” I went. The voices had come back when the alcohol wore off. I didn’t tell any one. One day at the rehab I was walking in the front door and the sun shined on the doorknob. It caught my eye and I stared at it. I walked in and sat down and had a smoke. The next guy that tried to open the door could not. He thought that the door was locked. It was not. The knob was broke. I cried because I thought that I broke the knob by staring at it. I was upset because I was stopping someone from getting help by locking him out of the rehab. At that rehab I was introduced to Alcoholics Anonymous and Narcotics Anonymous. One situation was when N.A. came to put on a meeting and they were getting the things out of their storage box. One guy found an A.A. chip in the box and threw it on the floor. I thought that it was done on purpose and meant I had to pick either A.A. or N.A. This was not true; I could have joined both. The voices kept me up at night. I was thinking the devil was still after me. After all the phone number of the rehab started with 666! I was in group therapy and one of the clients was upset because his mother had schizophrenia. I asked “What is schizophrenia?” The woman leading the group looked at me and said, “That means she is crazy.” I finally said to myself that I needed to tell someone everything. So the next day I told my counselor everything. She said I had more than alcoholism going on and I should talk to a psychiatrist. After three and a half hours he diagnosed me with schizophrenia. I told the doctor that I was thinking the way I was because of that cult I was in. They had brainwashed me. He said that no one did anything bad like that to me. You have a disease called schizophrenia. All I could think of is what the group leader had said, “That means she is crazy.” I cried and was very confused. It was decided for me that I should go to a ‘psych’ ward. I went to Saint Mary’s in Lewiston for ten days. They put me on Navane for medication. People there were nice. But I was talking to a nurse and asked if she heard voices. She said no and I didn’t believe her. We got in to an argument. I called her a liar. One day my Mother was visiting and we were playing cards in the dayroom when this guy came through the door. My Mom said, “Hey, I know you.” He turned out to be a second cousin who had schizophrenia also; mental illness often runs in families. Up to now I thought that everyone heard voices but just didn’t talk about them and people talked in double meanings so the devil could not know what you were talking about. Therefore you were protecting yourself against evil things from happening to you. I could not say this or write it down on paper at the time because the devil could read it and use it against me. After two weeks in the hospital it was decided that I could go back to the rehab because they thought I would have adequate supervision, and I liked the rehab better anyway. The voices were not so bad during the day but they were disturbing at night even though I took my meds, Navane and Cogentin. They had a drugging effect and gave me a stiff neck. I still had the double meanings. I went back home and lived with my parents. I tried to work at several jobs but the double meanings and delusions were so bad I had to stop work. I drank off and on; it helped get rid of the voices and delusions. In 1988 I was 23 and moved to Farmington to live with a friend Jesse and made a decision to live sober. He was my Peer Support Worker but didn’t know it. At that time I didn’t know what a Peer Support Worker was. He would bring me coffee in the morning and encouraged me to take a shower every day. He would remind me to eat. He would drive me to doctor’s appointments and counseling. He would remind me to take my medicine. He dragged me to A.A. meetings. Jesse would help me get groceries. When I went on my own I would still become afraid of people and walk out of the store without any groceries, leaving the cart full. Back then I had panic attacks so bad I felt like I was going to die. I felt awful inside because I was living off my family and friends. Would I have to live off others for the rest of my life? A friend Roger explained to me that there was something called Social Security Disability (SSDI) and that I would qualify if I applied. The application required statements from me, my family and friends, as well as work history documentation, proof of hospitalizations and doctor visits. My application was approved immediately because there was no question that I was very ill and disabled. Disabilities cannot always be seen on the outside! Jesse taught me how to fly fish, which I still enjoy today. My friends Tom and Chet taught me to ice fish, and I still do that every winter with my friends Tim and Jim who have the same illnesses and are on the same medication as I am. I sponsor Tim in A.A. Sponsoring him helps me as much as it helps him. The psychiatrist put me on another drug called Haldol. It’s a terrible drug to be on. There are a lot of side effects like constipation, dry mouth, muscle twitches, which with some people don’t go away. My joints in my knees would itch on the inside so bad that I would have to move all the time. I would pace the floor for hours, driving everyone around me ‘nuts’. At this time I had a nurse come to my house every three weeks and inject me with 3cc of Haldol in my hip. The Haldol is thick and oily so they used a large needle and it was painful. I would sleep for a day or two after an injection. In addition I took Haldol pills. My counseling appointments were always at 4pm because of the sleepiness, and the secretary gave me a hard time about always wanting the last appointment of the day. One day I said, “MaryNell, let’s put 3cc of Haldol in your ass and we’ll see who sleeps!” Not another word about sleeping late was said. During this time I went to group therapy, one-on-one therapy, and psychiatrist appointments. I would go to Tri-Country Mental Health Services and we would cook lunch, rent movies, order pizza. We went to a play. These early activities really meant a lot. I became depressed some days and could not get out of bed. My personal hygiene was terrible. The doctor tried different medications. He put me on Zoloft, and it worked well with the depression. But the double meanings continued so the doctor prescribed me Clozaril (clozapine) back in 1991. I was 26 years old. It worked like a miracle drug! I remember talking to Jesse and a close friend Cheryl and she said with a joyful voice, “look at him he is lucid!” I was able to think clearly for the first time in years and participate in the conversation. In the first five years on Clozaril I needed a weekly CBC blood test to check for agranulocytosis, a drop in white blood cells, which can be fatal. After the next five years I needed the test every other week. Now ten years later I need the test only once a month. Other side effects are drooling at night, and sometimes I have to change my tee shirt and pillowcase in the middle of the night because they would be wet. Also I get tremors called myoclonal jerks. I also get light-headedness when standing up quickly. I feel like I am going to pass out. Another side effect is that when I take my Clozaril I have to go to bed in about an hour. I can’t even watch TV. It has a heavy sedative drug effect. In the morning I get Clozaril ‘hangover’. I limit my driving in the early morning. Short in town trips are OK. But if I have to travel 30-40 miles it is very dangerous. One time I was going to Waterville from South Portland and the rumble strip woke me up several times. So I don’t do that anymore. But even with all these side effects, ‘life on Clozaril’ is so much better than any of the other antipsychotic medicines. I attended at lecture at UMF by a PhD psychologist, Pat Deegan, who has schizophrenia. I said that if she could have my illness and be a doctor, then I could become an architect. In 1996 I started classes at SMCC and got my Associates Degree in Graphics and Design in four years with a GPA of 3.871 out of a possible 4.0! I say this not to brag but to show that someone with a major mental illness can do well in college. I still have a dream to become an architect at some point. Medication for my mental illness is a combination of many drugs. At one time I was on Geodon in addition to Clozaril and Zoloft. I had put on 35 pounds, was not able to think well in the morning and my memory was like a sieve. My psychiatrist at Maine Med’s outpatient psychiatry and I talked and he told me about a new drug, five years old, that might help my memory called Abilify. We cross-tapered with the Geodon and my memory and morning alertness have improved. I remember batting averages and sports team statistics now! After the misery of my alcoholism and the early days of my mental illness, the annoyances of the side effects and the monthly blood test are really minor compared to the benefits of sobriety and not having those awful delusions and voices. The people that I have met in recovery from both diseases are wonderful and my life is far better than I ever thought it could be. I have a host of sober friends, some of whom who have mental illnesses and I have a new relationship with my parents and with God. I pray daily and I go to church every week. At last, I was confirmed a Catholic in the spring of ’06, and today I am a greeter at the Cathedral. I have gone to therapy every week for the past 21 years. I encourage my sponsees to get into therapy. I think that is partly why I have done so well. I take my medications the way they are prescribed. From time to time the combination of medications needs to be adjusted. Sometimes I get ‘breakthrough symptoms’ which are hard to distinguish from reality. I do reality checks with close friends like Jesse to verify if my perceptions of what is occurring match those of my friends. And I do self-talk by playing detective, which was taught to me by one of my psychiatrists ten years ago. It involves my looking for evidence that what I thought I heard was really what was spoken or not spoken. An example of a breakthrough symptom was clearly hearing my peer singing on the porch when she was still at work; I opened the door and no one was there! I continue to go to meetings of Alcoholics Anonymous and work the 12 steps in my life. I have been sober in A.A. for 21 years and I always had a “job” in A.A. I have gone to colleges, schools, hospitals and jails wherever we were asked to talk about A.A. I have done many other service jobs for A.A. and I sponsor people with co-occurring disorders. It is very rewarding. In the fall of ’05, I went to work for Shalom House, Inc. an agency that helps the mentally ill with housing, caseworkers and an art program. My job is as a Peer-Support Worker and a Consumer Educator. In Peer-Support I meet one-on-one with a peer who has a mental illness. I try to teach skills to integrate the peer back into the community, like riding the bus, or shopping for himself. Consumer Education is public speaking to schools, colleges, etc. about my personal mental illness story. Working for Shalom House has given me new friends and is a wonderful way of giving back to others some of the blessings and gifts that I have received over the years of recovery. Shalom House is one of the few places to work I know where you tell them you are crazy and they hire you! When I celebrated 18 years of sobriety in Alcoholics Anonymous, as is customary I told my entire recovery story to the group. I always include my work with Shalom House as a Consumer Educator, sharing my mental illness story with High School and College students and police departments. After the meeting my friend Irene came up to me and gave me a hug and asked, “Did you give a presentation at South Portland High School last semester?” I said, “Yes, why?” She said that her girls were in the group that heard me speak about schizophrenia. She was thankful that her daughters heard me speak because it led to a family discussion at the dinner table about schizophrenia and what the daughters had learned that day in school. It also led them to talk more freely about their aunt who has schizophrenia. My friend in AA was very grateful for what Shalom House had done to help her family understand more about mental illness. More recently several friends and I were approached by a police officer as we were leaving a Chinese restaurant. When my friend said, “This officer would like to talk to you, Jeff,” my heart jumped but I knew I hadn’t done anything. To my surprise the officer remembered my presentation about my mental illness at the Crisis Intervention Team (CIT) training session for police and corrections staff. He apologized for not having the time to thank me personally at the presentation but was very impressed and appreciative of my mental illness story and of the Consumer Educator work of Shalom House. In the spring of ’06 I heard about a national conference of the National Mental Health Association in Washington, D.C. Scholarships were available by competition for this conference, which would pay all the conference expenses, airfare, food and lodging. I submitted this story and won the only scholarship from Maine to attend. At the opening dinner of the conference, I sat at a front table next to a woman, introduced myself, and she said her name was Rosalyn Carter. And so I jokingly asked, “Any relation to Jimmy Carter?” She said, “He is my husband”. At the conference I saw a large bronze bell, like the Liberty Bell, at the front podium. It was explained that this is the Freedom Bell, which is made from melted-down shackles from across the U.S. that had been used to restrain the mentally ill in institutions over the years. In spite of doing everything ‘right’ that I knew of to do, in the summer of ‘07 I had a relapse of severe psychotic depression with delusions that landed me in Spring Harbor Hospital for 31 days! Mental illnesses are arrested but never fully go away. Suicidal thoughts I had not had for years returned to haunt me. Dr. Mallory caught me going downhill and one day said, “It’s time for you to go the hospital.” At the hospital we had lots of groups and one-on-one therapy. I learned a lot from the wonderful nurses, staff and the other patients. My many friends and family visited me daily in the hospital and it helped boost my spirits, although I remember very little of that whole experience. I began an additional anti-depressant medicine Effexor and started Electro-Convulsive Therapy (ECT). Many people refer to ECT as “shock therapy”. It’s not like in the old movies. You arrive at the day surgery unit at MMC; they give you a very simple memory test, start an IV, give you a muscle relaxant and something for headache in advance. When it’s your turn they wheel you into a little room, start oxygen through your mask, rub your temples with alcohol wipes, and tell you to relax and you will fall asleep. Then electrodes are placed on your temples and they turn on the juice for several seconds. Within minutes you wake up in the recovery area feeling groggy, confused and unable to remember the treatment or much of anything. They tell you to go home and go to bed for the rest of the day. ECT led me to have short-term memory loss but appeared to help with the depression and I continued with ECT for over twenty treatments. The batting averages and scores became a challenge again! As a greeter at church I recognized the faces but could not remember the names. I would be driving home and not remember where I was going or how to get there. My psychiatrist said the information was in there, I was just having trouble retrieving it. The memory loss was so severe I decided to stop the ECT treatments in December of ’07. After a month or so my memory got better, but unfortunately has never fully recovered. Recently I found out the memory loss can be permanent. At that time I was 40 years old and I was still having suicidal thoughts every day. I would talk about them in weekly therapy. My therapist read my whole case file, which is several inches thick, and discovered that no one has tried a mood stabilizer on me. She asked me if I would like to try one. We decided to try Lamictal. It is another miracle drug. The bad thoughts were not as bad. I still cannot figure out how a little pill can change my thinking so dramatically. Another symptom I have developed in recent years is olfactory hallucinations. I would take a shower, put on deodorant and still ‘smell’ body odor. I would take another shower and it would not help. Other times I would smell rotting garbage at someone’s house that friends could not smell. My doctor said we might increase a medicine, but decided not to because the ‘smells’ were annoying and not affecting my daily life. We also did an MRI on my brain to check for tumors, but there were none, so I just live with the olfactory hallucinations. I have now been out of the hospital several years. I feel much better and I have returned to the rewarding work with Shalom House of Consumer Education and Peer Support. The suicidal thoughts still come once in while and go, but without the psychotic delusions or obsessive thinking. I am enjoying life once more, and feel close to God again. I have just celebrated 21 years of continuous sobriety in A.A. I’ve learned the lesson that my mental illness will always be there; it will never go away. There are several things I do today to keep my mind and spirit healthy: A) Take my medicine as directed B) Go to weekly therapy C) Go to church and pray D) Go to A.A. meetings E) Hang out with good friends I love my job. I am giving back to the people that have helped me so much. Working for Shalom House for five years is the longest single job I ever had. When I give someone my business card it gives me a great feeling. My supervisor is better than any one could ask for. The staff is kind and helpful, whenever I need anything for my work they are always accommodating. I am grateful to be living in a time when shackles are no more!

Source: http://www.shalomhouseinc.org/httpdocs/documents/ShacklesNoMoreMarch2010.pdf

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