I haven’t written in awhile so let me catch you up. Over the last year I have worked with a therapist on issues relating to my physically abusive mother and my bipolar disorder; I had my first frightening episode of disassociation caused by my worsening dementia; and my garden won an award.
My mother was both physically and verbally abusive. Because of this abuse I have problems dealing with women. I was able to control those problems until HIV damaged those parts of my brain that filter responses to stimuli. As far as my therapist and my psychiatrist can determine this damage first became apparent in 1995 at which time I was HIV positive for eleven years.
In 1995, I switched from a very social person to a defensive and suspicious person. I began to question the motivations of people in making comments about me. For instance, if someone asked me why I hadn’t been to church in a while, I would lash out at them as if they were insulting me rather than see the comment as a concern about my well being. I began to see people engaging in elaborate plots against me. I became irritable. Eventually, I left the church I had been active in for over ten years because I felt they had plotted against me to deny me what I considered my due reward for my church work.
My behavior continued to worsen and was complicated by depression. I began to drink heavily. I continued to excel at my work and was promoted to a senior management position in part due to my energetic work ethic. Only later did I learn this energy was the manic phase of my bipolar disorder.
In 2002, I lightly touched a woman on the face during an argument over a neighborhood zoning issue. She never reported the incident to the police; nonetheless, she sued me for damages. I won the suit because the woman alleged I was threatening her with guns, a false allegation as I had no guns. She told my neighbors about this threat which caused my neighbors to misconstrue the many times I had called the police to deal with a neighbor who was taunting me and my partner with gay epithets from their deck which overlooked our back yard, a felony in San Francisco. That neighbor’s behavior was not a fantasy of mine but a fact supported by sound recordings. I had a security clearance that would have been compromised by gun violence and I countersued on that basis. Our suits were settled without prejudice. It was sheer luck that I survived without financial loss. The incident with that woman stemmed both from psychological issues with my abusive mother and the developing loss of mental filters.
Working with my therapist, I now understand that my problems with women are caused by my experience of the physical and verbal abuse of my mother. My mother beat me herself until I got too big for her to dominate. She then brought a man into the house who beat me; strangled me to the point of passing out; tortured me physically; raped me; and verbally abused me in front of people by calling me a fag and a useless piece of shit. I escaped that horror by running away from home several times. My mother would have me arrested each time I ran away. After each arrest, I was put into juvenile detention where I was raped and beaten both by the guards and the inmates.
Finally in 1972 when I was seventeen, I met a man who offered me a plane ticket and the offer to live with him. I quit high school, left home for good and began a period of my life in which I was passed from one man to another. In 1976, I broke from that life, earned a GED and started college. I earned a degree in accounting, met my partner of 33 years, Jim, and began a successful life. I thought I had left all the horror of my early years behind. I had not.
Working with my therapist, I learned to recognize when I was behaving because of experiences in my youth and the loss of my mental filters caused by the damage of HIV to my brain, and then to modify my reactions to more acceptable modes of behavior. The medications prescribed by my psychiatrist also help. But, in addition to issues arising from experiences in my youth, I have the rollercoaster ride of bipolar disorder.
Bipolar disorder runs in my family. My father and brother had it and one way or another it killed both of them. My brother’s bipolar was very bad. He became delusional and would go on wild sprees of spending and gambling. Thank god his wife was a nurse who noticed the signs of bipolar early so that my brother could get treatment. As those who saw the movie, Silver Linings Playbook, know, the drugs used to treat bipolar can be very sedating and can cause weight gain. On the bipolar drugs, my brother became somnambulant and gained 150 pounds.
My bipolar began quite slowly. I had long periods of intense activity followed by a more normal period. I never made the connection to my brother’s behavior. Slowly, the periods of hyperactivity began to be followed by brief periods of mild depression. The manic periods of bipolar are very pleasurable and make you forget the depression, for a while. As my bipolar developed, however, the highs of mania became higher and the lows of depression became lower. Before I retired on disability due to AIDS in 2008, my manic highs were so high that my employees would look at each other in astonishment as if a foreign being inhabited my body. The depression that followed the mania became so bad that I would lock my office door and stare at a wall for hours unable to do anything.
Working with my therapist and my psychiatrist I am learning to live with bipolar. I am no longer afraid I will become my father or my brother. My psychiatrist and I have worked out a medication regimen that just knocks off the top and the bottom of the bipolar swings so that I am not dopey. My therapist and I are working on the remaining manic highs and depression lows. As I said, periods of mania are very pleasant, at least, until after days of hyperactivity, you become a physical wreck. If I am not self-aware, I feed the mania with alcohol, which for me is a stimulant, seeking a greater manic high. If I am self aware, I use the mania to do useful things like cleaning out closets or washing walls. If necessary, I take extra tranquilizers to control the mania. For the most part, depression is not an issue. If I do experience depression, I run the danger of slipping into inactivity, resulting in even more depression.
Deep depression is painful in way that surpasses physical pain. If I am not self-aware, I am not able to take medications for the worsening depression and instead prefer to wallow in anguish and thoughts of suicide. The threat of suicide is the reason serious depression is life threatening. If I am self aware as I have learned from my therapist, I realize my condition and take medication.
As many of you may know, I was diagnosed with the initial stages of HIV dementia or what is called HIV Associated Neurological Disease (HAND), in early 2008. Before my diagnosis my thinking was slow and fuzzy. I had trouble remembering, becoming so confused that during a speech in front of 200 people on a subject on which I was very familiar, I became so confused I was unable to continue. Some of those problems usually can be attributed to depression. I also had auditory and visual hallucinations that usually can be attributed to mania. Only through intensive testing over a three day period by a qualified and highly respected HIV experienced psychologist, Dr. Charles Hinkin, and an equally respected HIV experienced neurologist, Dr. Elyse Singer, was I diagnosed with HAND. Those doctors were able to isolate the effects of depression and mania from the damage of HIV. Most of the damage was in the left of my brain. I was found to have significant damage to the executive function of my brain that processes reactions to unique or new experiences, an important function for a senior manager. Since that initial testing, my condition has worsened and I now have problems with learning as well.
I was advised to retire on disability and to seek the help of a psychiatrist experienced with dementia. I retired and began to work with Dr. Alan Karme, a recognized expert on the psychiatric problems of dementia.
Working with Dr. Karme, I have come to realize that I am not hearing people’s thoughts. This was a bitter disappointment to me as I had convinced myself that hearing people’s thoughts made me psychic. The visual hallucinations of ghostly shapes, mainly in my peripheral vision, were not dead people communicating with me (I often heard these shapes talking to me). Again, a bitter disappointment, as I thought I could talk to dead people. Both visual, especially those in peripheral vision, and auditory hallucinations are hallmarks of dementia. Initially, Dr. Karme treated these hallucinations with Resperdol. Working with my therapist, I have learned to be self-aware of these hallucinations and to discount them, and I have quit taking Resperdol.
The problems with my executive function and my increasing inability to learn continue to be issues. I get so nervous in public, that I get panic attacks that cause my body to shut down. For this reason, I use a motorized wheelchair when I am out in public without the support of my partner, Jim. I take Lexapro for the panic attacks but refuse to take so much that I am drugged so I still run the risk of a panic attack. I am unable to handle the multiple inputs one has when driving and can no longer drive myself, a bear as I have to depend on others to go anywhere. I get lost reading novels and I lose the train of thought reading histories, my personal passion. I still read the financial and international news in the Financial Times and can glean the gist of articles even if I can’t remember the details. Everything was going fine with handling my dementia until one morning a few months ago I had my first experience of disassociation.
I spent the morning by myself watching old movies on TCM. My partner Jim gets up later than I do. When he came downstairs for the morning, I was in the kitchen. He said, “Good morning, pumpkin”. I did not know who he was and I didn’t know what he was doing with my mother. My mother has been dead for eleven years. I was seized with dread. Until this experience, I never understood how mentally painful dementia is. I became afraid and confused, but I had sufficient self awareness to keep telling myself “This isn’t real, this isn’t real.” I didn’t respond to Jim’s good morning; but, he was so sleepy he didn’t care. After what seemed an eternity, I realized who Jim was and the fear and confusion passed. I remembered the episode in exact detail.
I described the incident to my psychiatrist during our next session. He was concerned, but assured me I shouldn’t worry about it. Yet, the memory of the fear and confusion I experienced with that period of disassociation continues to haunt me.
My advice to anyone who is experiencing HIV dementia in whatever form is to first be in the moment. Do not let the trap of future tripping make you blind to the beauty and potential of the present moment. One never knows how life will turn out so don’t worry about it. It is better to stay in the present and seize the day.
Second, do not go gently into that good night. Learn to be self aware of the issues caused by dementia and how to deal with them. Stay calm. Take tranquilizers, if you have to, there is no shame in needing the help of meds to cope with life. However, do not allow yourself to become so drugged that you lose the ability to lead a full and meaningful life. Doctors want foremost for the illness to go away and will prescribe as many drugs as necessary to do that. Work with a therapist on recognizing issues through self awareness and learn how to deal with them without the use of heavy medication. Work with your psychiatrist on the medication mix that best allows you to be both self aware and knock the points from your symptoms.
Third, stay active. I garden and read. Gardening is a good hobby for me. I stay in the moment while working in the garden. I concentrate on the task at hand, like a Zen monk. I have learned when reading to concentrate on the beauty of the flow of words even if I cannot remember what I just read. I am reading Richard Price’s novel, Lush Life, which is hard going for me as he jumps around in place and time in his book; but, even if I have trouble comprehending the story line, I can enjoy his beautiful prose. I you have a hard time understanding a newspaper article don’t be afraid to study it.
Fourth, to repeat myself on an important issue, become self aware. Try writing in a journal and taking a walk every morning. Try using the lessons in Julia Cameron’s The Artist’s Way and The Vein of Gold to develop your self-awareness. Work with a therapist. Meditate. Talk to a friend or loved one. Go to the theater, the opera, a concert. At Epidaurus, the ancient Greeks used theater to bring about a catharsis in the belief a healing would occur. They were right. Sometimes at a performance, one sees oneself as never before. A priest once told me that redemption was a journey in which we traveled to ourselves and saw ourselves for the first time. The root word, redeem, means to buy back. In traveling to ourselves, we buy back the self awareness we lost.
Enough with dreary memories and advice. My garden this year won award as a heritage garden that adds to the livability of the neighborhood. I have worked on the garden for ten years and finally I seem to have gotten it right. My neighbors nominated me for the award by which I am thrilled and humbled. I may have done a lot of work; but, in the end it is Nature that did the greater part.
All the best and I promise to write more often.