Editor’s note: This story has been published with permission from the author’s daughter.
Does anyone journal? I find that when I am alone and have no one who will listen, I can journal and get my thoughts out on paper. One night, an exceptionally long night with my daughter who has schizophrenia, I started to write in my journal, and before I realized it, my little story was born.
Imagine a loved one you can’t imagine life without. A person you would literally lay down your life for. A spouse, parent, sibling, your children. Now imagine the thought of “IT” being a part of them. “IT” is with them 24/7, even in their sleep. That would be OK if “IT” were a nice, positive thing. But what if “IT” had a bad side? What if “IT” told your loved one they were ugly? What if “IT” told them they were too fat? What if “IT” said to your loved one, “You can’t leave the house today because you’re disgusting.”
Wouldn’t you be mad?
What if “IT” was starting to control their actions? What if “IT” told them that doctors, the dentist and EMS respondents were out to kill you? What if “IT” was outside your house? You can hear “IT,” it’s after them, it’s after their animals, it’s after their family members.
What if “IT” got inside their house? Where they are supposed to be safe? What if “IT” was on the other end of the couch talking to them? What if “IT” made it impossible to be in a crowd? What if “IT” tells them to hurt themselves? What if “IT” confused them in the middle of a sentence and all of a sudden they can’t remember what they were saying? What if “IT” showed them pictures beyond any horror movie they have ever seen? What if “IT” made everyone stare at them, talk about them, want to attack and hurt them?
Wouldn’t you just want to go after “IT”?
What if “IT” fed into their dreams every night. What if “IT” got them so confused they can’t tell you where they are when they have lived in this town for almost eight years?
I betcha you would want them to stop?
What if “IT” scared your loved one so bad, they hyperventilated to the point where an ambulance was called? Would you want to intervene on your loved one’s behalf? What if “IT” wasn’t always bad? What if “IT” made sure they were never alone? What if your loved one didn’t want “IT” to go completely away forever?
Wouldn’t you try to explain the bad side of “IT”?
What if your loved one is losing control of “IT”? What if “IT” was part of your loved one? What if there is no chance of ever getting rid of “IT”? What if other people have had “IT” to0, and some manage, but some don’t? Would you fight tooth and nail? What if “IT” was making your loved one unable to make simple decisions? What if “IT” was taking over your loved one?
The “IT” I am referring to is paranoid schizophrenia. There is no known cure. “IT” will never go away. Sometimes “IT” can be managed with medications, sometimes “IT” cannot. So happy to say my child has IT under control at the moment and she is doing very well living with IT.
I am the mother of a 22-year-old with paranoid schizophrenia. She started having symptoms at 11 years old. She kept her illness hidden from anyone and everyone until she could no longer hide it. When she was young, I can’t recall anything out of the ordinary. We had moved to a new town and a new house. She didn’t seem to like being in her room or going in there for anything. I found out later that’s where she saw her first hallucination. She didn’t sleep alone, she always slept with her brother. That was about all I can remember that was somewhat out of place. I chalked it up to a new house and town.
As time went on things started changing with her. At around 12 years old, her friends were her life. She wanted to be with them 24/7. She had to be with them 24/7. When she wasn’t with them she was miserable, depressed, crying and absolutely scared to death that they were talking about her and turning on her. She became obsessed with being with them at all times. She got in with a bad girl who liked to do the exact thing she was most paranoid about. Turn friends against her. The depression that followed was heartbreaking. It was about this time that she became secluded. She withdrew from the family a bit. She would just stay in her room, didn’t want to eat, talk, watch TV or anything.
Between 14 and 15 she had definite changes in her behavior. She would get stuck on an idea or plan and if it didn’t go how she planned it, things got really bad for her. She became even more withdrawn. We had always been so close, and I felt like I didn’t know her at all. I couldn’t seem to relate to her as I didn’t know what was going on with her. She never wanted to be at home. She always wanted to be gone. She would take the bus in town early in the day and not come home till the last bus at 10 p.m. She was very secretive about who she was with or where she had been. I would hear her sometimes talking to herself in her room. I was so worried about her and it broke my heart to see her so hopeless and sad all the time.
One night she got angry. The rage was unlike anything I had ever seen in her. She has always been a quiet, very polite, loving, kind and gentle person. She suddenly threw open the door screaming on the phone late at night. She took off to see someone at the bus stop. When she got home she was out of control. It was the first time I had ever seen her like this. It hurts me to this day to recount the image of her face so heartbroken. She came back and proceeded to destroy her room. She threw furniture, clothes. I didn’t understand. This was when I sought out counseling.
We went to a couple different counselors. I was so desperate to help her. I wanted to see my happy daughter and feel her warmth.
She had always tried her best in school and never was able to just glide through. She worked harder than most just to pass. She is dyslexic and has reading comprehension issues. We had her in a school for additional help. We hired tutors and did all we could to help. The kids were heartless about it. In the 10th grade a kid started a rumor that she was a devil worshiper and she was bullied horribly. I kept her out for a few days. She was petrified to go back. I made her and within 20 minutes she called me crying. Some kids attacked her in the lunch room. That was it. I pulled her out for home school after that. This is something we have been unable to complete due to her illness. She longs to have her GED and she will some day.
At 15, she would rig her room with “booby traps” to make sure no one went in while she was in town all day. Desperate for answers, I risked it and went in. Later that night she got home and went to her room. All of a sudden she screams, “Who the f** was in my room?” She had never spoken like that before. She was angrier than I had ever imagined. Furious isn’t even adequate to explain how mad she was. I was so disappointed and mad at myself for invading her space, ruining her trust, taking away her privacy. I was just so desperate to help her, and wanted to know what was going on. In my eyes, I was literally fighting a battle to save my baby girl. She was yelling at me and I was crying and she was crying and I can’t remember her exact words, but she was saying I can’t help her and that it’s pointless to try. That nothing could be done to change the way things are. I was pleading with her to let me in and let me help her. All of a sudden she ripped off bracelets that went all the way up both arms and there were cuts. I about fell to my knees. The pain rippled through me. I just kept rubbing her arms, crying, begging her to never do it again. I had heard of cutting, but didn’t know anything about it. As I sit here recounting that night, I have tears rolling down my face.
It wasn’t very long after that she confided in me about the voices.
She has three voices, each with district characteristics and personalities. She has names for them as well. There’s a man, a woman and a teenager. The man is the most hateful. He calls her horrible names, tells her how unworthy she is, tells her to hurt herself. The lady is bipolar, according to my daughter. She usually follows the man’s lead. The teenager was usually nice, but when the other two were being ugly, the teenager was quiet. Years later she would identify the teenager as her best friend who was physically abused to the point that he took his own life.
These voices pretty much dictate where she goes, if she can turn a TV on, radio on, if she can have new shoes, what she will be doing and her self-esteem. The man tells her to do bad things. She is still in control over that portion. Even at her worse, she never hurt anyone or did anything he told her to do. At the present time she only has the two voices. Her best friend has disappeared. This makes her very sad. For a long time she didn’t want to lose the voices all together. She said she’s afraid to be alone. But now, they are mainly mean.
It took a couple months before I could get her to agree to see a doctor. I have manic depression, and urged her to go to a psychiatrist I love. The voices were very ugly about her going. They would instruct her not to talk to him and to not listen to him. In time, though, she started to let her guard down a bit. Eventually she agreed to medication. It took close to a year to find the right medications to stabilize her. She hated the process of finding new meds, but she is finally doing very well on this regimen of medication. She would occasionally have a bad day or night. but no where near like it was. I was seeing the smile I had missed for so long again. I was seeing my baby girl again. There were times during the process of finding the right medicines that the doctor advised hospitalizing her, but I fought for my child.
One thing that became very clear was the lack of support through this. It’s a very lonely feeling to not have your family supporting you during one of the biggest fights of you and your child’s life. I tried talking to friends about it, but they grew tired of the constant bad news, sad news and desperation in my story, so they left too. I was all alone in a the chaotic world of mental illness. I am still very much alone in the care of my daughter.
Then one day, she came home and told me she was pregnant. I’m not going to lie, I was pretty devastated at first. How will all this affect her mental health? What will happen when she has an episode and is carrying the baby? How will she raise a baby?
She decided to keep the baby. I am her mother so I decided to put my big girl panties on and support her in any way I can. The day I realized how important and how serious she was about this child was the day we went to the OB/GYN and they came in to take blood. She had not had blood drawn in over 10 years. She was trembling from head to toe, crying her heart out, telling me, “I know they are going to kill me, I know it.” I did my best to hold her trembling arm so the nurse could draw the blood. She overcame one of her biggest fears has that day. I know to some having blood drawn is no big deal. For us, that was like climbing Mount Everest.
She never missed a doctor’s appointment. She quit smoking. She went to the doctor, still scared to death, trembling and fearful. She had a very dramatic pregnancy due to a lot of unnecessary chaos and stress from the baby’s father, who was battling addiction. Labor was coming. We got to the hospital and they wouldn’t let us go back with her. Not a good thing at all. It took over two hours for them to let us go back with her. She was extremely scared by the time we got there. I always admired the strength in my child. But the strength she had the day my granddaughter was born is like superhero strength. She somehow found the courage to get through it and give birth to one of the most beautiful gifts our family has ever received. On October 29, 2014 my beautiful granddaughter was born into this world.
It’s been six months since the birth of my granddaughter. My daughter is on disability and lives in her own apartment. That has always been her dream. She currently is having some trouble with her illness, but the baby’s father and I are by her side. I am glad to report he has been sober for two months now and is an incredible dad to this baby. She lives less than five minutes away so I can get to her. She is a wonderful mother and I am so incredibly proud of everything she’s accomplished.
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