Living With a Schizophrenic
I lived 5 years with a schizophrenic individual. I'm going to call him "Tom". This individual also has Dissociative Identity Disorder (DID). In earlier years they would have called it multiple personalities. There have been so many times I wished it had begun before I got there...
I met Tom on the internet. He was younger than me, but he convinced me it could and would work. He said he had a friend married to an older woman and they got on fine. He was so easy to talk to. It seemed he knew what I was feeling before I ever said anything. We liked the same things. We had the same ideals. He was easy going and disliked drama. (Same as me.)
He was starting a business with a friend, so I moved to him. Life was wonderful. I got my nursing license and started working. We moved closer to my job with a view of the ocean. Life couldn't be better.
After about 5 months he proposed to me and I accepted. I knew this was the man I wanted to spend my life with! He was everything I dreamed of and so much more. The age difference did not seem real. I felt we were the same age when we talked. I was happier than I ever remembered being. What could go wrong? Only everything! Do we tempt fate by being too happy?
Coming to Kill Us
I came home one Friday night from work. Work had been long and arduous. I was spent, mentally and physically.
"This guy (I'll call him Fred) is coming to kill us!", the love of my life said. He was extremely agitated. "See that ship", Tom said, "Fred's on it, that's why it's sitting there. He's coming to kill us tonight!". There was a historic sail ship anchored where we could see it from our windows.
[Some history about Fred: Fred was a man that Tom lived with for a while. They traveled around quite a bit. They went to Florida to see Jacque Fresco, an American futurist and social engineer. They went other places, but Tom was vague about that part. Tom did say that they went to Washington to Fred's home. Fred wanted Tom to take a trip with him, but Tom said he was sick. Tom said after Fred left, Fred's wife borrowed money from her father to send Tom back to California. Tom always felt Fred was very disappointed with him.
The way Tom talked about Fred made me think Fred was an unsavory and unstable individual. I had told Tom that I didn't want anything to do with this Fred. I told Tom that prior to moving out to California. Tom agreed not to have anything more to do with Fred. I thought we were done with Fred at that point. Little did I know that Fred would play such a big part in our lives for the next few of years.]
I tried talking sensibly to him, but he would not listen. He just kept insisting this person was coming to kill him. Tom was greatly perturbed. I was worried, and the more Tom talked the more worried I became. "What actually happened between those two?", I wondered to myself. I looked Fred up on the internet, but there was very little information about him.
Remember, this was in the very beginning. Tom had seemed normal when I left the house that morning. Now he kept going on about being killed. I told everyone in our household to be careful and keep the doors locked. I told them what Tom said was going on.
Our whole household was in an uproar, but no one showed up to kill us that night. No one showed up to kill us the next night either. Luckily that morning the ship left. Tom calmed down some and I reiterated that I wanted nothing to do with this Fred. Tom said Fred had been trying to contact him using aliases on the internet via Facebook and other social media sites. I know now it was all delusions and hallucinations, but in the beginning I knew nothing. All I knew was the love of my life was acting weirder and weirder.
We Are Being Drugged
Things went pretty smoothly for the next week or two. Then, again, I came home from work to find him extremely agitated. He insisted that his friend and our landlord were sneaking into the house and drugging our coffee. He must have been having hallucinations and thought it was from drugs. He insisted I was drugged also. I denied being drugged.
I asked him to go to the hospital to get drug tested. He did not want to go. I told him then we would have proof to give to the police. I finally talked him into going. I was frantic myself by this time. I had no idea what was going on to make him act so strangely. He had been fine when I left for work that morning.
The First Emergency Room Visit
At the hospital, the drug test was clean. His blood pressure was sky high and his pulse was over 100. They gave him some medication for the blood pressure and pulse rate. After waiting a bit, both were still very high. We waited a long time for the mental health professional to arrive. She finally came and she wanted to talk to Tom in private. After she was done talking to Tom, she came out and told me that he could go home. He was not a danger to himself or to others.
I guess that is standard protocol. If the patient is not a danger to themselves or to others they are not admitted, but sent home. Tom was still insisting that our coffee was being drugged. Even after the clean drug test.
The ER doctor said the blood pressure and pulse were elevated because Tom was having a panic attack. I was very concerned that they were sending him home with his pulse still over 100 and his blood pressure about 200/100. The doctor gave Tom some ativan and told me that it would bring down the blood pressure and the pulse. He gave us a prescription for ativan and told Tom to take it whenever he was having a panic attack. We went home.
We went home, but things were not good. He continued to have paranoid delusions focusing mainly on the Fred who was coming to kill us all. Fred was going to kill his parents and everyone else he loved. He called his Mom everyday to make sure she was OK. And every day she was OK.
The pressure was wearing me down. I didn't know why Tom kept insisting Fred was coming to kill us all. I was still working full time as an operating room nurse. My daughter was working part time. I asked her if she could arrange her schedule so she could be home while I was at work. She did. Not long after her boyfriend (let's call him Frank) moved in. Later she would tell me Frank moved in because she was scared being home alone with Tom.
Tom kept going down hill. He was seeing things when we watched TV. He said he was seeing messages from Fred. I told him I was not seeing anything. He insisted I must have looked down or blinked. Needless to say, I never saw anything. I knew something was wrong, but he had no insurance and no one would see him.
My nerves were becoming shattered. Tom wasn't sleeping. He was keeping me up at night. I was still working full time (plus call) as an OR nurse. I was becoming jumpy and irritable. My concentration was suffering. I had anxiety when I was home and more anxiety when I was at work. I never knew what I may come home to.
Tom began a job as a bagger at a grocery store. He walked out the second day without saying anything to any one. Not to the other staff and not to his manager. He walked because someone made a joke. Something like, "You can just shoot me if I'm wrong". I can't remember exactly, but it involved a gun.
He walked home and told me that he got a message from Fred and had to leave work. He said Fred knew he was there and had sent a person to threaten him. Tom said he could never go back. I knew that Tom needed help, but still could not find a place to take him.
My anxiety level rose to the extent that my doctor prescribed me Valium to take at work. At this point, work was the only place I was going without Tom. My anxiety was affecting my concentration considerably. The Valium helped a little, but not that much.
More Emergency Room Visits
The next thing I knew Tom started talking to the air. He would raise his voice and jab his index finger at nothing. It was obvious he was arguing with someone I could not see. When I brought it to his attention, he would deny he had been doing it. Then came the day he was banging his head against the bed and pulling his hair out in clumps. All the while yelling obscenities.
I looked for an Emergency Room in a hospital that had a psychiatric unit. (The first hospital did not.) We took him to this new emergency room. He came out with the diagnosis of schizophrenia. They gave us the name and number of the local mental health clinic.
I was so glad to have this information. It was not in the phone book, I could not Google it. It was a secret that you received from the ER. I had called a couple of ER's prior to taking him in and they all said the same thing. Bring him in and have him evaluated. I could not get a mental health emergency number anywhere.
I called and made him an appointment at the mental health clinic. The appointment was a month away. He was going to see a nurse and do "intake". He would not see the psychiatrist that day. After he saw the nurse they would make him another appointment to see the psychiatrist.
They gave me the address and phone number for a place we could take Tom if he was in crisis. It was an alternative place to the ER. We took Tom there twice before he had his first appointment. The first time we took Tom, they refused to take him. They said his blood pressure was to high and we had to go to an ER first to get a note saying he was OK. They were solely a psychiatric unit, and did not do medical care. We brought him back to the ER connected to the hospital with a psychiatric unit.
Tom's blood pressure was exceedingly high and did not come down significantly when they gave him medication. After a long wait, Tom was admitted to the psychiatric unit to monitor his delusions and blood pressure. The hospital released him after 4 or 5 days.
When they released Tom we were told he had dissociative identity disorder. The doctor put him on some psychiatric medication and blood pressure medication and said keep the appointment with the psychiatrist and see his primary care doctor about his blood pressure.
The only problem was that Tom did not have a primary care physician. He did not have insurance. He did not qualify for Medicaid because of his age and "lack of disability". I guess a few ER visits did not qualify him as disabled. He could get some state aid but he would have to be actively looking for a job or working. He was unable to do this, so I paid for his medical doctor visits and the medication.
He Was A She
When he came home from the hospital, he believed he was a young girl. This girl was very mean to me. She did not like anything about me. She was very prim and proper, and so opinionated. However if I asked her what she liked she would answer, "I don't know, I was just born".
Tom had asked me to love "the girl" if he came home as a she. It was the last request he made of me as himself. He knew what was happening at that point, I guess. I tried my hardest to love her. All I really wanted was to throw my hands up in disgust and be done with him and her.
She spoke very badly of Tom. She told me Tom was sleeping and never getting up again. I was lost, but I put on a strong face and continued. I cried in the bathroom and at night after she had gone to sleep. I slept next to the body of the person I was grieving for. That may have been the greatest insult to my senses. He was right there, but it was no longer he, now it was she.
People began asking why I didn't leave. I felt the promise of engagement was equivalent to marriage vows. Although I had not yet made the vows publicly, I had made them privately. I couldn't leave now when he/she needed me most. At least that's what I told myself. But, I'm also co-dependent. I love to be needed! The need was there and I was hooked.
At this point in time I thought that Tom could come back. I thought he could be whole again. I thought Tom's love for me would bring him back. I see now that I wanted to believe...I needed to believe...so I believed. Today I know it was an unrealistic hope, but then it was hope.
He Came Back
After about 2 weeks, the love of my life returned. Tom was not there at all times and she still reared her opinionated head, but at least he was there sometimes. I felt like he was getting better. Oh, the lies we tell ourselves.
Beginning Mental Health Care
The day finally came when he could see a psychiatrist. The psychiatrist diagnosed him with schizophrenia and dissociative identity disorder (the new term for multiple personalities). The psychiatrist gave he/she prescriptions and told us to come back in a month. The prescription medications were extremely expensive. The pharmacy told us to check with the mental health clinic. Often they would pay for the medication. We checked and they did. This helped greatly.
Tom was taking his medications, and life seemed to be a little better. He/she seemed to be spending more time in reality. The paranoid delusions seemed to loosen their hold. He would still talk about it, but not as fervently or as often. How little I knew back then.
He recognized that he had been seeing and hearing things. He told me that he had thought the cat was me and I was the devil. However, he still thought someone was coming to kill him and everyone he loved.
The Lies Begin
I thought Tom was taking his medicine every day. He assured me that he was taking it as prescribed. Gradually he started becoming more agitated about the person who was coming to kill us. I assumed he needed a change in the dose of his psychiatric medication. How innocent I was back then.
One night he got up to use the bathroom. Suddenly I heard a giant THUD. I went to see what the noise was. Tom was laying, half in and half out of the bathroom, having a grand mal seizure. When the seizure stopped I was trying to bring him to the bed to lay down. Halfway to the bed he began having another grand mal seizure.
I told my daughter to call 911. She later said she had never seen me so distressed. She called 911 and the ambulance eventually arrived. He was taken to the local ER. I was told he had another seizure in the ambulance. I followed them to the hospital. They admitted him for observation and to try and find a cause for the seizures.
The hospital did scans and blood work, but never discovered the cause. He was diagnosed with epilepsy. I realize now that he must have stopped taking his psychiatric medication. Seizures is one of the side effects of stopping the medicine suddenly. It was a medication that needed a weaning period to stop.
10 Symptoms of Schizophrenia
The Cherry on Top
Then came the day that my hand was crushed at work. I was taking a patient out of their room to go to the OR. The doorways were narrow, leaving just enough room for the stretcher plus about 4 inches on either side. I was at the foot of the stretcher and the anesthesiologist was at the head. Going through the doorway, my hand got stuck between the door handle and the side rail of the stretcher. I was trying to push the stretcher back a bit so that I could get my hand out when the anesthesiologist gave a big push forward.
That was it, my hand was stuck. I couldn't move the stretcher back or forth. I needed to get to the side rail release and put down the side rail to free my hand. My hand immediately swelled up. Luckily it was a quick surgery because there was no one to relieve me. After the surgery was over, the OR manager let me go to the urgent care for evaluation.
The urgent care I had to go to ended up being about 3 towns over. My hand was in dreadful pain, swollen and bruised. It was pretty useless. I finally found the urgent care and was eventually seen.
X-rays were taken and no bones were broken. I thought "Hallelujah" to myself. (I found out later that it would have been better to have broken bones.) I was diagnosed with a crush injury to the right hand, given some prescriptions and told to return in 3 days.
After 3 days the hand was not feeling better. In fact, it felt worse. My manager at work would not let me come back to work until I was 100%. After a couple of weeks of having appointments every 3 days, I was sent to physical therapy.
I began receiving short term disability checks. Short term disability equals about 66% of your earnings for the previous 6 months. I found out that my call hours were not included. Money began to be tight.
Remember that house I was living in, the one with the ocean view? Well the rent was $2500 a month. Easy to pay while I was working, but difficult on only 66% of my previous pay (minus call). After a few months, money began to be a real problem.
And It All Falls Down
A month before my lease ran out, I told my landlord we would be moving out. He said we couldn't move out because I owed him 5,000 dollars. I had no idea (and I still don't) why I owed him so much money. I asked him for an itemized bill. He would say he was making one, but he never did get it to me.
Meanwhile, he was calling me everyday asking for the money. He told me I could not move out until I paid him. I told him I needed to move out because I could no longer afford the rent. This went on for a couple of weeks.
My grandmother had recently died and left me 5000 dollars. I finally used it to pay the landlord, even though I never received an itemized bill. I just couldn't take talking to him anymore. Every day he would call and yell at me. He would tell me I was lazy because I was out of work on workman's compensation.
I found a place way out in the boondocks of Riverside County. The rent was $500. It was a travel trailer. Not much room, but enough for Tom and I. Much more affordable than $2500. The only problem was there was not enough room for my daughter.
By then I was broken. I became unable to make any decisions. I could not think. I guess the anxiety took over. I had to ask my daughter to please handle packing everything up and deciding what to do with it. I told her she could have it all, I couldn't handle thinking about it. She started packing, she had a couple of weeks left in the month before she had to move.
I had a check coming from workman's compensation that my daughter and Frank were to use to get themselves a place. Three days after I moved, the check should have arrived, but it did not. That was a Friday. On Monday it still did not come. I could not handle it. During all of this, Tom kept getting worse and worse.
That week the landlord left an eviction notice on the door. It was one of those that says to move in 3 days or pay more money. My daughter and Frank finished packing and got out of there within the 3 days.
She and Frank moved in with Tom's parents for a while until they saved up the money to rent their own place. It was strange, they had no room when Tom asked if we could stay, but they let my daughter and Frank stay. I found out later Tom's parents were too scared of him to let him live with them.
My workman's compensation payments had stopped. That was why I never received the check. The doctor wrote that I was at maximum medical improvement (MMI). The doctor had told me that he was not making me MMI, but turned around and did just that. Needless to say, I had many problems with the insurance company handling my workman's compensation, but that's another story.
While all this was going on, Tom continued his downhill slide. When we moved to Riverside County, I had to jump through hoops again to find a mental health provider. The clinic in Orange County continued to refill his medication while we were trying to get set up in Riverside County. Thank the Lord for that!
Before all the hoops had been jumped through, Tom's uncle said he wanted to pay for Tom to see a certain psychiatrist. This psychiatrist had previous experience with multiple personalities. It was a godsend! Tom began to see her. She was a two and a half hour drive one way, but we weren't doing much otherwise.
5 Steps to Beat Stress
A New Beginning
The place we found was in the mountains between Riverside and San Diego Counties. A small mountain valley community with a couple of shops and two gas stations. It was on a scenic route to Palm Springs. As you can see in the photo below it was very picturesque.
We began living in a travel trailer on a horse rescue farm. The people who owned the place were fantastic. I had explained about Tom being a little girl who liked to wear skirts. They said it would not be a problem. The woman had been an English major with a Psych minor in college. She found Tom's conditions more interesting than frightening.
By this time Tom had become 3 people. Tom, the nice one; Jerk, the mean one; and Kelly, the girl. They each had different mannerisms and different styles of speech. They had different likes and dislikes. Tom was pretty easing going and got along with both of the others. Jerk and Kelly disliked each other.
These were the days when they knew about each other. At one point they could trade places knowingly. They said it was kind of like turning around.
Living with three people in one body is interesting, but also exhausting! Tom's new psychiatrist said that the ultimate state of dissociative identity disorder would be a coming together of all the parts to make one whole. Tom, Jerk and Kelly were all against this. They saw it as killing each other off. Not one of them was willing to give up control to another. Sharing was hard enough.However, none but Kelly wanted to be the "face" full time.
Jerk would put on manly clothes and Kelly would come out and put on a skirt and a frilly shirt. Tom was happy in either outfit. Yes, I bought them each their own clothes. It was interesting shopping with them. Tom would be out, but Kelly would make him stop and look at girl clothes.
Tom and Jerk were age appropriate. Kelly, however, was a little girl of about 5-7 years old. I still have coloring books, crayons, Barbies and stuffed animals of her's. Tom and Jerk were both schizophrenic, but I do not think Kelly was. At least she did not share the other's delusions.
Dissociative Identity Disorder
A Small Sense of Normality
Can there ever be a sense of normalcy in such an abnormal foursome? You would think not, but we fell into a routine. We slept, we ate. Tom was writing a book. Kelly liked to play with her dolls or color. Jerk only really made an appearance when either of the others felt threatened. Or if there was alcohol. Tom and Jerk both liked to drink.
When we spoke about becoming "one", none of them wanted the task of being the face. No one wanted to spend that much time in this world. Tom and Kelly liked to come out for a while, then trade places. They said it was like sleeping when they were not "out".
It hurt me deeply that Tom didn't want to be here all the time. He had told me, in the past, that he would always be there for me. He apologized, he said he still loved me, but he just couldn't stay out. At this point, they all said they loved me. It was a confusing time.
How Many Are There?
One night I met a 4th personality. He was a character from one of Tom's stories. I had read the stories and I recognized the character. He was interesting to talk to. He was a newly turned vampire who did not indulge in humans. He exuded confidence and ease. But he only visited me once.
The psychiatrist had told Tom that if he did not want to become "one", he should learn who else is inside him. There were others in there, but they did not want to be seen. They did not like to be spoken of either. Tom said they would usually stay hidden, coming out occasionally.
Since they didn't like to be spoken of, we never knew exactly how many people lived inside of Tom. Tom, Jerk and Kelly all honored the others' right to remain unkown.
Our Trailer Home
Back to the Schizophrenia
Tom and Jerk continued to have paranoid delusions about Fred coming to kill us all. Some days would be better, some days would be worse. The worst times were when Tom or Jerk claimed that Fred had sent them a message. They had to walk out to the main road and Fred was going to send a car. They needed to give themselves up so Fred would not come and hurt me.
It was hard work keeping them from walking away. Several times they were set to do it. They would gather some stuff in a backpack. Then they would take it and start walking, never saying what they were doing. I always talked them into staying except one time.
Then one time they left in the middle of the night after I was asleep. From what I was told Tom and Jerk were having a verbal argument. Tom didn't think it was a good idea to go, but Jerk was set on going. So Jerk went and dragged Tom and Kelly along for the ride. At this point Kelly was sleeping and Tom and Jerk were continuing their verbal argument.
When they arrived at the main road, the verbal fight escalated to a fist fight. I don't know exactly how you fight yourself, but they did. Kelly woke up on the ground with scrapes all over. She didn't know where she was. She remembered that there were dogs barking.
Kelly said she followed the stars and found her way home. She arrived about 5am, frightened and nearly catatonic. Scrapes all over, clothes ripped, she was shaking with fear. I got her changed and put her to bed. It wasn't until she had slept for a while and woke back up that I got the story from her.
After that episode, Kelly would not let the other 2 out for quite a while. When I finally saw Tom again he told me that he and Kelly were chopping Jerk up and locking him in a small box. They did not want him around anymore! I guess some of the others that I did not know were helping also. They said Jerk was very strong and it was a difficult task to accomplish.
If I had my choice, it would have been Kelly locked up. She was very prim and proper and very opinionated. I correlate her with the start of my problems. She was the one who came home from the hospital. I would have been happier if Tom just had schizophrenia and was just Tom. It freaked me out to know that Kelly could be watching Tom and I make love. Or, God forbid, they could change places during.
This was soon to be a non-problem as Tom came out less and less. When he was out his paranoid delusions seemed to be taking over. Tom swore that he was receiving secret messages from Fred both on the computer and on the TV. Kelly did not want any more walks in the dark. I think she kept him in most of the time and only let him out occasionally for me to see him.
About this time all our computers stopped working. Tom and Kelly blamed Fred, I blamed them. We had 3 computers and suddenly all three were broken. No more messages from Fred on the computer.
I think Kelly knew I didn't want to be in love with a girl. When I got really fed up, Tom would come out. Kelly was not the only girl. There was another, Anna, who was a teenager. With all the teenage angst and discomfort. She felt I was very critical of her. Maybe I was.
I had been a tomboy as a child and both these girls were very girly, girl. Neither one liked having a beard. Facial hair grew like a weed on Tom's face. Neither girl could see the facial hair in the mirror, but they could feel it. I had to begin shaving Tom every day. I bought makeup and more clothes for Anna. She liked to be pretty. Both always wore dresses. Both liked dolls. I just could not relate.
One day Jerk showed up again. I asked him about being locked up and he laughed. He said he was the strongest and although he let them think he was locked up, he really wasn't. He joked that he should lock up Kelly and Tom. Maybe he would have, except for the fact that he did not like to be out for very long.
I think he showed up because they knew I was getting fed up. I had not signed on for a caretaker's job. That's what I was to the girls. Someone to take care of them. Throughout all of this I was having my own problems also. Workman's compensation turned into a constant battle. Money was always a problem. Over the 5 years I used up all my retirement plans and IRA's.
Tom would still show up occasionally. He was very concerned about Fred. This never ended for him. The trailer's bedroom was on the side that had the trailer hitch. On the trailer hitch sat our propane gas tanks. Tom was extremely worried that Fred was going to make them blow up one night while we were sleeping.
Getting A Dog
Tom wanted to get an alarm system. To me this was silly. We lived on a 5 acre "farm" that was completely enclosed by a fence. The fence was to keep people, coyotes and mountain lions out. The gate was locked. The owners lived a little way behind us. There was a studio apartment attached to the garage across the road from us. There was also a trailer house just to the right of us.
I talked him into a dog instead. Not only is a dog a good alarm, but it will also protect it's owners. So we agreed, a dog it would be. Agreeing on the type of dog was a little harder.
Neither of us wanted a small dog. I wanted a Labrador, he wanted something more protective. I could not convince him that a Labrador would protect it's owners. He thought they were all large teddy bears. The owners of the property not only had the horse rescue, they also bred American Staffordshire Terriers. Tom and I agreed to get one.
In case you didn't know, American Staffordshire Terriers are the original "pit bulls". All dogs who look like this breed are called pit bulls. The dogs our landlords raised were bred for conformation and temperament. Her dogs were friendly and quiet. They did bark if someone they didn't know came onto the property. It only took them 3 or 4 days to stop barking at me when I drove in. After that they recognized me.
The woman took care of the breeding...who was mated to whom. My dog's grandfather was a world champion, bred by this woman. She is quite a well-known breeder in the AmStaff world. People all over the country bought her dogs. The usual price started at $1500 for a puppy.
Time to Call 911 (Again)
The studio apartment across the road became vacant. We decided to move over there. We wouldn't have to worry about anyone blowing up the gas tanks and it had a fenced in yard. We picked out a puppy. We would have the move completed before the puppy was old enough to leave her Mom. Life was looking good.
I had taken to watching the landlord's dogs when they went away for the weekend. I fed and watered them and gave them some pets. Usually Tom would come with me and help. He loved the puppies. When there were puppies we could play with them to our heart's content. Puppies are so wonderful!
Usually I would go in through one gate and come out another that needed to be opened from the outside. Tom would wait at that gate and open it for me. He found it very difficult to remember instructions, so I found that it was easiest if he only had to open the gate.
One day I arrived at that gate and there was no Tom. I finished up feeding all the dogs and went home. Tom was laying down. I asked him why he had left and he told me that Jerk planned to do something bad to me. He never said what bad thing Jerk had planned.
To thwart Jerk's plan he had come home and taken all his Dilantin, a medicine to prevent seizures. I had only picked it up a couple of days prior. He basically took a month's worth. He was already slurring his words when I found him. He did not want to go to the hospital, but I didn't give him a choice.
I called 911. The ambulance arrived a little while later. I was in a tizzy, needless to say. Tom was not responding at this point. I needed to explain to the paramedics that he may be 1 or 2 people. I gave them the names and explained that one was a girl. I guess I did not do a good job explaining. They wrote down Kelly's name instead of Tom. I explained again at the hospital.
Puppies are so wonderful!
Tom stayed in the hospital 4 days. During the first day he did not respond. He woke up the second day but his speech was so slurred it was hard to understand him. The hospital considered his taking the overdose a suicide attempt. I had to explain that he was actually trying to save me from one of his other personalities. To this day I am not sure if it was a suicide attempt or not.
I had spoken with his psychiatrist while he was in the hospital. She told me to lock up all his medicine. I bought a small lock box and locked it all up. Now, when he needed some medicine, I doled it out. I also began watching him take it.
He Is Now A She
I don't know why I keep calling him a he. He was more a she than ever. One of the last time I spoke with him, he told me he was transgendered. He said he was a girl in a man's body. He told his psychiatrist and she took him off his testosterone. She told him she could not take care of giving him hormones. He would need a medical doctor for that.
I was very confused. I was not sure how that made me feel. Was I actually in love with a woman? I loved Tom, but I wasn't sure I loved the woman he was becoming. Prim, proper and opinionated...I really wasn't sure how I felt. In later years I realized that I didn't want to be in love with a woman. And (in later years) I told him so.
He told the psychiatric he was a "chick with a dick". (I mean she.) She did not want surgery at that time. She just wanted to be able to pass as a woman. I tried to accommodate this new wish. Tom was a thing of the past. He never was around anymore.
We bought more clothes and more makeup. I brought her to a salon to get her hair done and to have her chest and face waxed. She loved her new hair cut, but the waxing didn't go that well. They did her eyebrows and she started crying from the pain. They tried the upper lip, but I guess it wouldn't work. The chest didn't work either. (Tom was a very hairy man.)
We went home that day with a very unhappy Anna. I'll say Anna because by this time she was more Anna than Kelly. It is very confusing knowing what name to call them. And they would get upset with me if I got it wrong.
Take Some Pictures
By the time we arrived home I had cheered her up. I told her I would shave her and she could put on makeup. We would take some pictures because she would look beautiful. We got home and she tried on different outfits until she found one she felt was suitable. I shaved her and she put on her makeup. She smiled for the pictures.
She was balding some at her hairline. I had bought her some Toppik to hide it. You shook it on and it looked like hair. I was surprise, but it did look like hair. I had also bought her some Rogaine to try and get hair to grow again. It was an expensive time of life.
I think by this time I felt sorry for her. I was still grieving over the loss of Tom. I was giving up on him ever returning. I do not think I ever really loved her, and I think she knew.
One day Tom suddenly appeared again. Anna had gone to bed, but Tom woke up. He burst awake having no notion of where he was. The studio apartment's walls were painted cinder blocks. He yelled thinking he was imprisoned by Fred. (At that point in time we had the bedroom set up in a back room meant for storage. I found out it was meant for storage because there was no insulation. I moved the bed out to the main room when winter came.)
I went into the room and calmed him down some what. He was still very confused as to where we were and how long he had been asleep. He was confused, but I was overjoyed to see him. I had thought he was gone forever. Little did I know this would be the last time I saw him.
He calmed down as we talked. After a bit he was himself again. Relaxed, easy going, I was ecstatic. He played some video games. Ate some lunch. Said he was tired and took a nap. That was the end, Anna awoke and I never saw Tom again.
I had seen Tom just long enough to bring all the grief back to the forefront of my mind. The grief was always there, but I busied myself with tasks and forced a happy face for Anna. I spent the next week in tears.
Back to Routine
I pulled myself together slowly and slowly started up the daily routines again. Wake, coffee, lunch, dinner, sleep. I also cleaned and did laundry. Anna began watching more TV and began to want to drink. Every day it was the same thing. Can we go get some beer? I got so sick of this question. However, as codependent as I am, I did go and get the beer more times than not.
We fell into a routine again. Watched many Hallmark love stories. Disney for teens. Got beer. Ate meals. Slept and woke. Pretty boring life. We went three times a month to food banks in town. It was a good town to live in when you are poor. I always had beans, usually got some meat and fresh vegetables. I would go to the vegetable market. They also carried eggs and milk. The liquor store always had salami and cheese. Both places carried tortillas. We made do.
I didn't go anywhere without Anna. I was always scared of what I would come home to. Another overdose? Cutting herself? I always took her with me to avoid these things. Plus she would get scared staying home by herself. She liked going out and talking to people. People in Anza never said anything to her about wearing a dress in a man's body.
A Brief Explanation of Schizophrenia and Dissociate Identity Disorder
During this time Jerk was around. He seemed nicer and more of a cross between Jerk and Tom. He would come out if Anna was scared. One time a show on TV scared her and Jerk came out suddenly. He grabbed the fan and started beating the TV before I could get him to stop. He was so panicked that I thought he was going to hit me. Thank goodness he recognized me.
Jerk would be around for the beer, play some video games and listen to Heavy Metal music. He would sing to the music, waving his arms and pointing at nothing. To this day, my dog hates Heavy Metal. She was scared of Jerk when he acted that way. And he only acted that way with the music.
Jerk was around daily for a few months. He said he existed to protect Anna and I. He told me that he would always come out if I called him. But the one time I called him, he didn't answer.
It seemed I had no will left. They could do what ever they wanted and I made meals, cleaned, gave medicine, got beer. I had no will to fight them anymore. I had begged them not to drink every day, but I didn't have the will to enforce it. I asked Jerk not to turn the music so loud, but again I couldn't find the energy to enforce it. It seemed I had been drained. As if I had nothing left in me.
One day Anna stopped talking. She stopped getting up and using the bathroom. She couldn't eat unless I fed her. She was like a little baby. This went on for a day. The second day I called the ambulance. We went to the local hospital and she was admitted for catatonia.
Anna was a patient there for 2 weeks. I had explained that she was transgendered and needed female nurses. She was uncomfortable with men. The charge nurse said she would try to accommodate. I stayed with her the whole two weeks. I would run home to see our dog about every 3 days. Our wonderful landlords were taking care of her.
During her stay I called on everyone in the hope someone would come out and take care of the body. I called Jerk the most because he had told me he would always answer. There was no answer. Not from any one of them.
While we were in the hospital, Anna began to shake all over. We wondered if it was seizures and they did an electroencephalogram during one of her fits. It did not show any seizure activity in the brain. The put her on Valium to decrease the shaking. The Valium worked.
After 2 weeks Anna was able to feed herself with help and was talking a little bit in short sentences. She could walk a little with support, but not far. She was incontinent of bladder and bowels and was wearing diapers. The charge nurse and the discharge planner spoke to me. They said they would look for a rehabilitation facility to put her in so she could relearn how to take care of herself.
They were having problems finding a place for her to go. They finally suggested a nursing home. I had worked in a nursing home once, not a good experience. I told them there was nothing that the nursing home could do that I could not. I decided to take her home. Another big mistake.
I rented a wheelchair for when we arrived home. Anna would sleep at night. When she got up I would change her and put on clothes. I would get her up to the wheelchair and let her watch TV. A physical therapist came every 3 days and began getting her up using a walker. She would walk for him, but when he was gone she would not use it anymore. All she ever said as an excuse was, "I forget".
During the two weeks in the hospital I had hurt my knee slipping on some trash the nurse left in the room. The constant turning and getting her up had hurt my back. I begged her everyday to grow up quickly. I was wearing a knee brace and my back was in constant pain.
One day she grew up. She could suddenly use the bathroom on her own. She could walk and she could talk. She could feed herself and shower on her own. She still had the shaking spells. Anna said she had no idea what happened. She had been asleep.
Due to her continued shaking her psychiatrist kept Anna on the Valium. I was to give the Valium 3 or 4 times a day. Anna loved the Valium. She would remind me to give it if I was even a few minutes late. Looking back on it I think it's strange I didn't notice that she could remember when she wanted. I was just so drained emotionally I didn't notice.
Finally the time came to stop taking the Valium. This was perhaps the hardest time I had with them. The psychiatrist was weaning Anna and Jerk off the Valium. Anna would ask for more. Jerk would come out and demand more. He would threaten me. I told them both the same thing, "Call your doctor. If she says yes I will give you more." Neither one wanted to call the doctor. Jerk would calm down after that and go away. After 2 or 3 months I weaned them off it.
Valium is such an addictive drug to some people. Anna and Jerk fought me tooth and nail to have more. Thankfully it was something I had no control over. I may have given in to them just to have them be quiet about it.
Tried to Kill Me
I was laying in bed, sick to my stomach. Anna got up and used the bathroom. She came out and I could hear her rummaging around in the silver ware drawer. I heard her walking towards the bed and I turned slightly to see what she wanted. It was a good thing I turned, the knife went into my shoulder instead of my neck.
In a very monotone and matter of fact voice the body said, "If I have to die, so do you." I wrestled the knife away, cutting my fingers some in the process. Thank the Lord for adrenaline. I never felt anything. After I had that knife, whoever it was (I'm going to call this one Ghost) ran into the kitchen and got another knife. I wrestled that one away also, cutting my fingers more.
Seeing we had no more large sharp knives, Ghost started throwing bottles at me. There was a 6 pack on the table that needed to be taken out to the trash. I ducked the first bottle and it went through the window behind my head. I ducked another and started collecting my things. I needed to get my purse and put the dog on a leash to escape. Bottles were flying at me, then glasses and plates.
I locked Ghost outside at one point, but he just broke the window on the door and came back in. The landlords were away at an endurance horse race. The neighbor who lived in the trailer now was not home. I left him a message telling him if Anna comes to the door, lock it and do not let her in.
I finally had my purse and the dog on the leash. I tried to escape. I was through the door when Ghost caught me. He started wrestling me. I was able to get him off me. He was off balance and fell and hit his head on the concrete. He wasn't moving at all. I left him there and got into my car and started driving away. I stopped a little way off to call the police.
I looked in the rear view and saw someone running to me. There was blood running from their head to their face. They were crying and barefoot with just a short sleeved dress on. It was winter and a very cold day. I waited with my doors locked and my windows rolled up till they came up to me.
It was Anna crying her eyes out. She had woken up on the concrete and saw me driving away so ran after me. She was very confused and stated she didn't know what had happened. I finally had pity on her and let her in the car and drove home.
I never did call the police, but I realized later I should have. I should have also taken pictures on my cuts, but I didn't. I just took her in the house, calmed her down and fed her. We watched TV like nothing ever happened.
Second Time Trying to Kill Me
Things were pretty much routine for about a month. Then one day when Jerk was out I started questioning him about where Tom was. Jerk was getting upset, but I didn't lay off. I paid the price for that.
I was cooking some bacon in a frying pan. Jerk was so upset he grabbed the hot frying pan and started beating me on the face and head. I finally passed out and I have no idea if he continued hitting me or he stopped. All I know was I woke up in the morning with burn marks on my face, shoulders and hands. Half my face was black and blue. I had two black eyes.
Did I call the police? No, dummy that I am. Did I take pictures of my face? No, I did not want any remembrance of the event. Not calling the police and not taking pictures came back to haunt me later.
Things Get Fuzzy
After the beating on my head with the frying pan, things get fuzzy. I don't remember much for about 6 months. I remember being sick. Nauseated, every bone in my body ached and I could not eat. At the end I could barely keep down water. I finally went to a doctor.
The doctor gave me medicine for my nausea and also NSAIDs for my aches and pains. I went to see her again 3 days later, then she had me follow up every week for a month. By then I was feeling better. I was eating and the medicine was working on my aches and pains.
I told my doctor of my anxiety and confusion. She referred me for counseling. The counseling would be a telecommunication in the same building as the doctor. I would not need to leave town. It was becoming increasingly hard for me to leave home. Leaving town was almost out of the question.
Anna's psychiatrist had been doing phone calls to Anna. Most of the questions I had to answer because Anna would say she didn't know. I didn't know much myself, but I answered to the best of my abilities.
I do remember that Anna said she likes men. She said she loves me but not that way. She told me I should find a boyfriend. Maybe he would have a friend for her. I don't know why this broke my heart again, but it did.
Anna started forgetting common items. I told her to look on the windowsill for an item. She asked, "What's a windowsill". It gradually got worse. I felt she was going to go catatonic again. She didn't know what a moon was, nor a fork. Common everyday items slipped from her mind.
Her psychiatrist told me to take and have her admitted to a pyschiatric unit. I tried 3 hospitals. They all said she wasn't a danger to herself or others and she should go home. Anna wasn't the one I was worried about. I was worried who would come out if Anna left. Pity I hadn't reported the attacks to the police or taken pictures, they may have helped at this point in time.
Send Her To Her Parents
I spoke with the psychiatrist daily. She did not maintain any hospital privileges, so she could not admit Anna. When I ran out of places to try, the psychiatrist said we need to send her to her parents. They will be able to get a guardianship and get her admitted.
The psychiatrist took care of all the plans. She had a medical transport person come with us to help me with transfers, hiring a rental car, etc. We took Anna to the ER close to her parents' house. They met us there.
I did not tell her what we were doing. I forgot to pack her many clothes. It was as if I thought I'd be visiting or something. Her parents were in Ohio, I lived in California. I left them in the ER. I said goodbye, but I don't think Anna understood. She did not remember her parents. I had to leave her. I could not longer do anything to help her. I left.
Our dog and cat
6 Months Later
Six months later I received a phone call. It was Tom on the other end. I cried with joy. It seemed I was the only thing he remembered. He didn't remember living in California. He didn't remember our dog. He didn't remember his parents or his childhood. I didn't care, I was so happy to have him back.
We started speaking daily on the phone. He remembered that we were engaged. Funny how I never questioned the things he would remember. I wanted it to be him, so I believed it when he said so.
I had been keeping in touch with his Mom to make sure everything was OK. She had told me he was back, but I didn't believe it until he called. I made plans to move to Ohio to be with him. His father still had guardianship and didn't want him moving back to California.
Trying to pack to move was one of the hardest things I had ever done. I could not remember what I was doing. My psychiatrist finally put me on 2 weeks of Ritalin to help me focus. I found I could focus better with the medicine. I wish I could have stayed on it longer, but I guess it is also very addictive. At least I had 2 weeks to pack.
A Letter to Tom
I sent this letter to Tom before I moved to Ohio. He convinced me that he was Tom and he still wanted to marry me.
"Why do you say you want to get married again. Why do I feel as if you are playing with me? Am I just convenient, someone who will come take care of you? Are you so scared of life that you can't live alone? There are so many things I don't understand. I told you how much it all hurt me and you couldn't even say sorry? Why do you want to lie to me and use me? Do you hate me so much? You are always so busy doing whatever. I do not feel as if we actually converse. You say things, I say things but the connection seems broken.
The last you told me, you like men. You were very up front and told me to get a boyfriend. You told me that you don't love me that way. Now, suddenly, you want to marry me again. Where is the truth in you. How long before you change your mind again?
Why are you using me this way? Why do you hurt me so? I love you so much, but I'm not sure I should. You don't seem to want to talk about it, but I need to. I am so hurt, it's like I can't think straight. I'm back to crying all the time. I'm tired of being strong.
I've never been so alone. If it wasn't for God I would just end it. After you left me, I stayed and loved all of you. But all of you just drifted further and further away. Were you just testing me? Or was living with me so awful none of you wanted to stay?
You say you can't explain it, but if you don't know what happened, how can you prevent it from happening again. I don't need my heart broken again. I used to cry myself to sleep because I missed you so much, all the while laying next to someone who looked just like you.
I don't know what to do. I am lost. Every day I pray to God to help me find my way. I am lost."
I was lost...then I thought Tom was found. The mind is a funny thing, we believe what we want to be true. Looking back, it seems I knew the truth. I just didn't want to believe it.
You left me long before I sent you away.
I thought you no longer wanted to stay.
Now that you're gone, you have come back.
And I'm alone wondering what did I lack.
Moving to Ohio
I moved to Ohio. My daughter and Frank moved with me. We rented a house and began our new lives. Tom moved in with us. He and I lived in the finished basement. I insisted on a platonic relationship. I was scared to commit. We only had one bed, we slept together, but that was it.
Things were going OK. He was a little different from the Tom I remembered. But everyone changes over time. This was in the beginning.
After about 3 months, Tom started feeling like the rest of the family was against him. He insisted they talked badly about him. The paranoia was setting in again. He said he was taking his medicine. I was letting him take care of the medication. I did not want to become his nurse again.
Over the next few weeks he went downhill. He was more paranoid about the rest of the family and his parents. He called his Mom, Candy, and his Dad, The Guardian. I asked him to call them Mom and Dad, but he said they weren't his Mom and Dad. He didn't have a Mom or Dad.
Then he told me he had stopped taking his Seroquel. I was very distressed by this. The one condition I made when he moved in was that he had to take his medicine every day and not stop it. He told me that he had looked up the Seroquel and he did not need it. It was for schizophrenia and he had multiple personalities. He said it wasn't like he stopped his seizure or blood pressure medicines.
Things went downhill from there. He thought he was doing fine. He was talking and arguing with the air. Doing the finger jab. Banging his fist on walls. Not fine in my book.
When we talked it seemed that he was having a conversation with someone else. He would argue with me when I agreed with him, then deny he had done it. In his mind he never argued, just tried to have a spirited conversation. At times we actually did connect.
No Tom Ever
During this time he explained to me that he was not Tom. He said there is no Tom, Tom never existed. I guess I had been in love with a personality that was not strong enough to stay. He explained that he was the "face" because I told them life would be easier if they just presented one face to the world.
He called himself the "civil servant". All he did was what the others told him to do. He also mediated between personalities when they were fighting. He never spoke with the air, only with the others. He asked me to refer to him as they. There was no single him or her, just all of them.
Just a Normal Guy
He somehow remembered we had been engaged. He couldn't remember anything from the past except myself and that we were engaged. He wanted to get married and spoke eagerly about the wedding. He wanted to set a date, but I kept putting him off. He was not the person I fell in love with. In fact, there really wasn't ever the person I fell in love with. It was just a face that they thought I would like.
Time to Move
My daughter and mother were encouraging me to have him move out. My daughter told me how sometimes he would go upstairs and just stand in front of her doorway. She said she would get up to use the bathroom, open the door and there he was, just standing there. They started keeping their doors locked.
I had lunch with Tom's dad one day. Tom thought I was going to the doctor's, I didn't want him to know that I was talking behind his back. I was scared of what may happen.
I told Tom's dad that I needed Tom to move out. I explained how he was not really Tom at all. It seemed as though Tom's dad had been expecting just this. We talked about where Tom could go to live. Tom really wasn't able to take care of himself. I cooked his food, I did the cleaning and the laundry. Tom would attempt these tasks but get caught up talking to the others and forget to finish.
Tom's mental health nurse came to see him that same day. Tom's dad and I went back to my house and had a meeting with Tom, his dad, the nurse and I. I told Tom that I wanted him to move out. I told him he was not the man I loved. I told him it hurt too much to continue living with him.
Get Him Out!
Tom acted as if he really didn't understand. Maybe he didn't. However, he continued to get worse. Now he would yell at me for things I hadn't done. Finally, my daughter moved me to one of the upstairs bedrooms. After that I had very little to do with Tom.
I found out from the nurse that Tom's doctor thought he was a schizophrenic. The doctor thought he heard voices and the delusion was that the voices were real. I thought that made a lot of sense.
About 4 months later, Tom was still living with us. My daughter gave Tom and his father an ultimatum. Tom would be out by the end of the month. Even if he had to go to a homeless shelter. Tom's parents were living with his sister and her family. Tom was not allowed to move in with them.
A couple of weeks after the ultimatum, Tom's dad called and said Tom was moving to his uncle's the next day. Tom moved. I spoke with him on the phone a couple of times after that. He wanted to know about getting married and getting our own place. I told him that would not happen. Finally I blocked his number from my phone. I haven't spoken with him since.
I Still Care
After all of the above, I still care for the individual(s) living in Tom's body. I still speak with his parents. Sometimes I ask how Tom's doing. They say he is doing well.
I finally understand that I was more harm than help to him. My co-dependent tendencies allowed him to get away with things normal people would not put up with. It still hurts that I couldn't help and it probably will always hurt.
What hurts more is I fell in love with what? A dream? A ghost? Or a personality not developed enough to stay put. Whom ever I fell in love with I still love them dearly. But I can never have them back.
25 Facts About Dissociative Identity Disorder
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© 2017 Kari Poulsen