Internships/Fellowships

The Touching, Award-Winning Story of a Young AIDS Widow

[The following paper won an award at the 2005 Beacon Conference. In it, the author, Evette Olszyk, tells her personal story of being widowed by AIDS, and what her traumatic experience can teach all of us about the need for open communication about HIV/AIDS, and the darker sides of human nature when confronted with this disease in a climate of secrecy. Had there been effective testing, reporting, and partner notification in effect, she could have been warned that she was being exposed, and her husband might have been referred for treatment in time to save his life. Ms. Olszyk has since been accepted as an intern with the beyond aids foundation, and has been helping to educate students and the public about preventing HIV/AIDS.]

Dead Man Walking: The Silent Death of Progressive Multifocal Leukoencephalopathy

As I prepare my paper for the 2005 Beacon Conference, I am thinking of the many people who will read this, and I hope it will touch the hearts of everyone who does. I want my paper to be talked about; I want people to know what happened to my family and me. HIV/AIDS needs to be discussed openly. There are many people in the world who have the HIV virus but keep it a secret, like my husband, Patrick. They are afraid of being rejected by family, friends and people they meet. This stigma has been placed in our society by those who are uneducated about this disease.

I live in Monroe County, Pennsylvania and it is the third largest county to have HIV/AIDS. This disease knows no boundaries; it will continue to take the lives of men, women and children as long as people refuse to be responsible to themselves and others. I am very thankful that my children and I are not HIV positive, however it does not excuse my husband’s actions as to why he did not tell me he was HIV positive. The experience of watching my husband die of AIDS has inspired me to be an advocate for this disease. I will do all that I can to make this a safer place not only for me and my children, but also for your family. As you continue to read my paper I want you to think of your children, grandchildren, nieces and nephews. I want you to think of them getting married starting a new life with the one they love and trust. Think of the wedding vows they would say and how they would look into each others eyes and seal it with a kiss. I will discuss my husband’s illness, the progression of this disease, the death and dying experience as well as the grieving process I am still going through.

Progressive Multifocal Leukoencephalopathy is commonly known in the medical field as PML. The cause of PML is a common human polyomavirus known as the JC virus, "The JC virus is characterized by demyelination or destruction of the myelin sheath that covers nerve cells" (National Institute of Neurological Disorders and Stroke [NINDS], 2002). This virus only becomes active when the immune system has been compromised. In my husband’s case, his immune system was weakened by the human immunodeficiency virus known as HIV. I will explain how PML affected the four lobes of my husband’s brain – frontal, temporal, occipital and parietal. I will also describe the emotional rollercoaster and grieving process that my family and I still go through.

On November 19, 2003, I came home from the hospital after giving birth to my daughter. I remember asking Pat, to go to the grocery store to pick up milk, bread, eggs and peanut butter. He said he would need to write a list. As he started to write the list, he asked me to spell milk. I thought he was joking. He got so frustrated trying to write what I needed from the store that he gave me the list he was writing and told me to write it myself. It was just then that I realized he was not joking and that he was very upset. I noticed the words that were on the list were all misspelled. This was the first noticeable sign of damage to his frontal lobe. In Karen Huffman’s (2004) Psychology in Action, it states that the frontal lobe is located at the top front portion of the two brain hemispheres, which is located directly behind the forehead. The frontal lobe receives and coordinates messages from the other three lobes of the cortex and is also responsible for motor control, speech production and higher functions.

On December 13, 2003, my step-daughter, Katelyn, came over to visit. She later went to visit with her friend Chrissy a few houses down from our house. Pat and I decided to go to the mall to let Katelyn pick out what she wanted for Christmas. When we arrived at Chrissy’s house, Pat got out of the car to ring the door bell. I noticed when he was going up the stairs that he could not determine where the next step was so he could put his foot down. He also had to put his arms out to get his balance. At this point his cerebellum, vestibular and kinesthetic senses were starting to deteriorate.

On December 14th, my husband complained to me that he felt numbness in his right hand and leg. I called for an ambulance. Pat had difficulty explaining what symptoms he was experiencing. I noticed he knew what words he wanted to say, but he could not say the words. This is known as Broca’s aphasia. The Broca area is found close to the base of the motor control area in the frontal lobe (Huffman, 2004, p. 68). After several tests at the hospital the doctor told my husband he had had a stroke. He was admitted into the hospital, where they continued to run tests.

On December 15th, when I arrived at the hospital, Pat looked at me and said that he was not going to make it and that he would not be returning home. That was the last day that he would speak in full sentences. The following day my husband’s ability to speak fluently diminished. The only words he could say were "I want to watchamacallit". It was very difficult to see him in this condition and to watch him struggle during his speech and physical therapy. By the end of the week, Pocono Medical Center prepared Pat to be transferred to Gnadden Hutten Hospital where he would receive intense speech and physical therapy. At that time, Pat could no longer feel the right side of his body, he was unable to walk without assistance; he complained about headaches and his frustration was beginning to turn to anger. At this time, he was showing signs of damage to the front of his parietal lobe where the somatosensory cortex lies, and deterioration of all three major functions of the frontal lobe which are motor control, speech production and higher functions such as motivation and emotional behavior. Also, his peripheral nervous system (PNS), which is responsible for sending information to the central nervous system (CNS) and connects the brain and the spinal cord to the body’s sensory receptors such as, the muscles, and glands, were becoming compromised (Huffman, 2004, p. 51).

On December 19th, Pat was transferred to the rehabilitation hospital. Over the first three days at this hospital he spent four to five hours a day in speech and physical therapy. When I arrived on the third day, he could no longer walk without assistance from two nurses, which meant that his cerebellum, which helps to control balance, was continuing to decline rapidly. His speech production in the left frontal lobe continued to worsen to the point where he could only say "yep" or "nope", and his occipital lobe was now deteriorating because he had difficulty seeing the television. Pat’s aggressive behavior escalated and became more frequent. During my husband’s two weeks in rehabilitation, I complained every day that his condition was worsening and that they needed to do another MRI (Magnetic Resonance Imaging). On December 31st, Pat’s doctor ordered an MRI to be done. The next day I received a call from the doctor, and he told me that Pat had not had a stroke, but that he had a tumor in the brain, and that they needed to transfer him to Lehigh Valley Hospital, where a team of neurologists would evaluate him and confirm these findings.

On January 3rd, my husband was transferred to Lehigh Valley Hospital. That day, I met Dr. Camicci, and I asked him if Pocono Medical and Gnadden Hutten hospital had sent all of the MRI’s and CT (Computed Tomography) scans to him. Dr. Camicci said no, but that he would order new MRI’s and CT scans. Dr. Camicci was 95% sure that it was a Glemoblastoma tumor and that this tumor was fatal. He explained that a biopsy would need to be done in order to confirm his theory. Pat was scheduled to have his biopsy done on January 6th. Pat still had a full understanding of what everyone was saying to him. He would laugh every time a joke was told, and he would nod ‘yes’ or ‘no’ when he was asked a question. I remember the day before his biopsy that I asked him if he was afraid and he nodded yes. I then asked him if he still thought he was going to die, and he nodded, again, yes. I asked him if he loved me and he nodded, yes, again. My last question to him was if he wanted to be buried, and if so, did he want to be buried with his father in Somerville, N.J., and he nodded yes. The day of the biopsy while Pat was waiting to go in for surgery, I told him his son, Nick, was going to call him. When Nick called, I put the phone to Pat’s ear; I could hear Nick talking to him, and Pat just burst into tears. At this point of his illness Pat’s temporal lobes were still functioning because he was able to comprehend language (Huffman, 2004, p. 70).

After the biopsy, Pat started to have seizures and he could no longer sit up on his own, feed himself, or hold my hand. As I waited for the results of the biopsy, Pat’s condition continued to decline during that week. However, his sense of olfaction (smell), gustation (taste) and audition (hearing) were still functioning (Huffman, 2004, pp. 129, 133-134). At the end of that week, the pathology report was completed, and I met with Dr. Camicci for the results. Needless to say, I was devastated when he said they could not confirm that it was a brain tumor because the tissue that was extracted from my husband’s brain did not meet the criteria of a Glemobastoma tumor, or any other tumor for that matter.

The doctor asked me to sign a consent form so they could test him for HIV. My first words were, "That’s impossible. I just had a baby five weeks ago, and I was tested during my pregnancies with both of my children".

Dr. Camicci’s assistant Claire explained to me that they needed to start the process of elimination, but before they could start they would need my written consent to test him for HIV. I signed all of the paperwork, and then was told that results would be available in three days. After reading and signing the consent forms, it finally hit me that Pat could be dying of AIDS. In my 34 years of life, I have never felt so much stress, helplessness and fear in the magnitude that I felt that day.

I went home and called my sister-in-law and told her what happened, and her first words were "Oh my God Evette, you don’t know!" I said to her, "What is it?" She began to tell me that when my husband left his ex-wife approximately ten years ago, he left her for someone that was HIV- positive and that he knew of this girlfriend’s condition. He even went to her medical appointments with her.

I could not believe my ears. I felt like I was dreaming. It turned out that my husband’s close friends, family, and ex-wife knew that he was with someone that was HIV positive and that he was at a high risk for this disease. The only thing I could think of was being with my children. After the initial shock, I felt angry, hurt and betrayed by my husband and those who knew about his relationship with someone who was HIV positive. I could not understand why they did not tell me, especially knowing that I was having his children.

I received a phone call from Claire letting me know that the results were in and that Dr. Cumicci would go over the results at his office. When Dr. Camicci uttered the words "your husband is dying of AIDS," I felt as if all the blood in my body just drained out of me. The only thing I kept thinking of was my children. I immediately called the pediatrician and my medical doctor. Words can not express the feelings I felt as I watched blood being taken from my children, especially my six-week-old baby. The day after our blood was taken, I received a call from my doctor and the pediatricians, informing me that my children and I did not have the HIV virus. I felt so blessed at that moment that I fell to my knees and prayed.

According to death and dying researcher Elisabeth Kubler-Ross, after spending many hours interviewing terminally ill patients, she discovered that there were five sequential stages of death and dying. The first stage is denial. Kubler-Ross (1969) says, "among the over two hundred dying patients we have interviewed, most reacted to the awareness of a terminal illness at first with the statement, "No, not me, it cannot be true." The second stage is anger followed by bargaining, depression and acceptance. I believe that my husband did go through these stages and in that sequential order because I am able to look back in hindsight and remember them as they happened. Pat’s denial started when he chose not to be tested for the HIV virus after having a relationship with someone that was HIV positive. His anger started when she left him, and he started to date several different women and did not tell them he was at a high risk for this virus. I also believe that Pat showed tendencies toward Antisocial Personality Disorder, where little regard is given for others’ lives. I think Pat’s bargaining happened the day we were married. My husband was not a religious man, but the day we got married, he went to our kitchen and asked me to hold his hand while he lit a white candle and prayed. Pat said he prayed that our marriage would last, but I think his prayer was about him living the remainder of his life with someone by his side before his death. I think his depression and acceptance both started when he was admitted to Pocono Medical Center because he was not going to be home for the holidays, and he knew he would never return home.

My experience with the five stages of death and dying are not in any order because I still go back and forth between all of these emotions. I started bargaining when I thought he had a brain tumor. I remember driving to the hospital crying and begging God to let him live and have a productive life with his children, especially our daughter, and in return, I would go to church every Sunday. Denial started when I was told he needed to be tested for the HIV virus. Anger started when I found out that he was with someone who was HIV- positive and he chose not to take care of himself, even knowing that we were going to have children. Although I have accepted his death, I have not been able to accept his actions towards me. It was not until after his funeral that I was sure that he knew he was dying of AIDS. At my husband’s job, he had a locker that had several pictures of his older children from when they were babies and several work certificates that needed to remain at work. I found them hidden on top of our china cabinet after his funeral. At this point I became very angry again. Accepting that he did this to me and our children is a constant battle for me every day. I try to make sense of it, but it is difficult when I have so many questions that will never be answered.

For me the grieving process will never go away because of my children. He left behind a five-year-old son who just adored him, and a daughter who will never know him. Right now I am able to focus on my son, Anthony, because my daughter is too young. Anthony is also going through his own grief. The hardest thing for me as a mother is not having the ability to take his pain away. My son remembers every story Pat ever told him and he knows every place Pat took him. I feel like I have big shoes to fill because I always felt I had to be more of an authoritarian parent to compensate for my husband’s permissive parenting skills. Now that Pat is gone I am more of an authoritative parent. Anthony sometimes likes to send his father cards; I guess this is how he feels he can express his grief. My mother took one of her angels and told my son that if he put the pictures under the angel when he went to sleep that the angel would take it up to his father in heaven. My son believes this to be true because he is in the preoperational stage of cognitive development. According to Piaget’s research, the preoperational period has two stages, the preconceptual stage, which starts at age two to four and the perceptual thought period, which starts at age four to seven (Singer and Revenson, 1996, p. 33). I am very thankful that my son is in the perceptual stage because he is animistic. I am very thankful that children are animistic at this age, because it puts me at ease to know that I am able to comfort him in order to bring him a sense of safety, love and comfort.

February 1, 2005, will mark the one year anniversary of Pat’s death. Even though Pat’s death was a tragedy and has been an emotional struggle for my son and me. I think it has made me a stronger person. My life has changed, but not completely for the worst. Pat’s death has given a new lease on life for me and my children. Because of him, I am able to go to school and further my education, spend more time with my children and raise them myself, but most of all he enabled my dream of becoming a mother to come true. I will continue to be a positive role model for my children, teach them the meaning of life and keep my husband’s spirit alive by telling my children about their father and the good things he did do. Although I will never understand my husband’s choices, I will always remember him with loving thoughts. I dedicate this paper to him because he has made it possible for me to continue with my dreams and goals in life.

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