Today, May 4, 2019, is a double anniversary for me.
Four years ago as I was by his hospital bedside, my father finally passed.
Twenty-five years ago today I went through a mutilating surgery that still affects every minute of my life when I had a permanent colostomy. I survived but everything changed after that.
The two are related.
I was diagnosed with cancer a few weeks after my mother had died of lung cancer. I barely had time to start to grieve for the loss of my mother when I was facing my own termination.
At the time of my diagnosis, my odds of survival was 90% that I would be dead within five years, and I knew it then, and after the surgery, I essentially prepared to die. I tried to wrap up my life. I wrote as much as I could about my own life at the time and tried to live as much as I could in what I then thought was my end of days.
That I survived is not a sign that my diagnosis was wrong, as it was not. A few months after my surgery at a cancer-patient support group, I met another person with the same diagnosis as I, but from five years earlier. He was in his end stages and he said something to me that I will never forget, “People like you are going to live because people like me died”. By that, he meant that doctors would learn how to treat cancer by learning from the failures like him. He died a few months later, but here I am still here because my chemotherapy treatments were different than his, and here I am.
My siblings and even my father never seemed to take my condition seriously, neither my potential terminal situation nor the extreme pain that my post-surgical life was. A few weeks after my surgery, when I could barely stand and my surgical wounds were still oozing blood and puss, my sister SCREAMED at me to “STOP FAKING AND GET A JOB”. My siblings now point out that I am still alive as “proof” that I was lying then about my cancer and diagnosis in order to be a faker of some sort. Even now my colostomy is a constant reminder that I am not whole. It’s not something that the world can see either as when I’m wearing clothing, I look like anyone else. It has, for one thing, affected my romantic life. I’ve had several women over the years suddenly decide they didn’t want to pursue a relationship when they discovered what is under my shirt, although most would not admit that was part of their decision.
Dad helped support me through the years of healing when I was in constant pain and could often barely walk without constant pain and the ongoing fear that the cancer would return with a blaze. However, after several years, my cancer did not come back and the treatments were successful, and I began to realize that I might live after all and rebooted my life.
At the time of my diagnosis, I had been an engineering student at Cal Poly San Luis Obispo. I was focusing on materials science and my direction was microgravity science, which is what is done in on the space station. I came up with a way of refining iron and other metals and materials in microgravity, and had I not gotten cancer and I had gone on to graduate with an engineering degree and then get a Master’s and Ph.D., I might now be working with organizations that are looking to mine the Moon and Asteroids. However, the years of recovery and family financial difficulties made it impossible for me to continue down that path.
I changed majors and became a computer science student at CSU Monterey Bay, and then Dad got sick. He had open heart surgery and got a severe infection and fell into a coma. The hospital wanted to terminate his life support. They told me he was old and would never recover. The head cardiac nurse and the hospital social worker got me into a conference room and tried pressure tactics to get me to agree to terminate Dad. They told me that I was being selfish and needed to “let go”. They said that Dad would ultimately die anyway and all I was doing was prolonging his suffering, and in the remote chance he did survive, he would be in a vegetative state. I kept asking them for medical and scientific proof of their assertions, but they refused and kept saying things like “knowing that won’t help your father”.
I am now, and was then, a very scientifically literate person. I spoke to Dad’s doctors about his condition and I told them to talk to me like they were talking to another doctor. I think for many of them, they were at first bemused by my apparent arrogance to think I, a non-medical person, could understand their years of training. Some went overboard by being as medically complex as possible, and for most people that would have worked, except that I was able to understand them and prove I understood by asking intelligent and relevant counter-questions.
I believe it was because I was so aggressive and able to prove that I knew what was happening to Dad that kept the hospital from simply disconnecting Dad or otherwise doing something to terminate him without my permission, i.e. they may have realized I would have figured it out whereas others, such as my late Aunt Mary-Katherine didn’t when my Uncle C.E.’s life support was terminated within 24 hours of his admission.
I was with Dad almost every day. I would sit by his bedside and talked to him. I tried to communicate with him by squeezing his arm in pulses, One-squeeze, two-squeezes, three-squeezes, etc. I massaged his arms and shoulders. At one point a nurse came in ordered me to stop. I asked why and she said “it’s not dignified” and I told her that if she got a doctor to order me to stop, I would stop, but only then”. Many of the ICU nurses, such as her, thought I was a foolish “relative in denial” and I was constantly being told to “get ready” for Dad’s death, but I kept on being at Dad’s bedside. As the Teri Shavo case of the brain-dead woman the Republicans, such as Jeb Bush, had made a fake issue about was then recent news, I was constantly alert to the possibility that I was indeed a “relative in denial” and I kept asking for proof, such as brain scans and other tests and signs that Dad would indeed not survive, but they never produced any such things.
During this time, a neurologist told me “in twenty years of medical practics, I’ve never had a patient in your father’s condition ever survive”. I became quite despondent at this, but as I considered, I wondered how often a pronouncement by a doctor becomes reality because their decision is simply accepted.
They kept telling me that Dad was “unresponsive” as “proof” that Dad was no longer in his body. However, I wondered if “unresponsive” was not the same thing as “unaware”.
I was inspired by a couple of movies, “Johnny Got His Gun”, which is a fictional story about a World War One soldier who had both legs, both arms, both eyes, and his jaw blow off. He is kept alive as an experiment for medical research. In the movie, the doctors don’t believe someone in that condition could be aware but he is, and much of the movie takes place in the imagination of that soldier lying on a bed with nobody around him understanding he is aware and can hear what’s going on. There’s more to that movie as well.
Another movie that inspired me was the Robin Williams movie “Awakenings” in which a group of patients have been in an unresponsive state for years and even decades, but it turns out that while unresponsive, they have not been unaware. Again, more to that movie than I’ll go into that now.
I had been spending a lot of time with Dad and I was failing many of my classes at CSU Monterey Bay. I would be in the ICU for many hours and while “official” visiting hours were limited, I became so familiar to ICU doctors and staff that I was allowed to stay by Dad often through the night. In the Day, I would go to class, exhausted, and then come back that evening. My brother and one of my cousins would drop by to briefly visit during these times when I was not there, and then later claim they were there as much as I was. Once I was there when my cousin came by and all she did was stand by Dad’s bedside silently, and then later she said that she “did as much as I did”.
Meanwhile, my brother and sister were obsessed with Dad’s house. My brother, who was living in the house at the time insisted that “it’s only common sense” that he should get to keep the profits of the house and left a lot of incoherent screaming phone messages about me “trying to fuck (him) out of the house”. My brother had elaborate plans for what he would do with his share of the house sale, namely that he was going to move to Nevada and set up an auto repair shop. My sister, who lived in Las Vegas then and now, said that “it wasn’t fair” because my brother and I could “empty the house before she could get there” after Dad’s death. This dynamic is still in play now that Dad has died.
I was becoming exhausted and sick from my lack of sleep, spending all night with Dad and trying to continue my university classes in the Day with brief snips of sleep here and there. I came up with the idea to make an audio recording and put it on a CD of me talking to Dad. I recorded clips of myself talking to Dad, telling him what had happened, where he was and more. I told him I loved him and talked about how we would go fishing when he got out. He had a new grandchild he had not yet met, and I told him how he and baby Larissa would learn to walk together. I thought that he was on so many drugs that when he was aware it would be mostly of pain and bright lights. I considered that most doctors and nurses probably would not think about telling a patient, especially one they considered terminal except for a “relative in denial”, where they were and what had happened to be a waste of time if they even considered it at all. I put these voice clips along with some music and audio sound effects to stimulate Dad’s mind and put them on a CD and set it to play so Dad could hear my voice even when I was not there. I initially set up the speakers and I left the ICU, but I had forgotten something in Dad’s room and I went back about ten minutes later and the nurses, thinking I was a foolish “relative in denial” had already turned off the CD, so I got Dad’s primary doctor to make it a medical order to play that CD for Dad several times a day. I went home and slept for two days.
Every time the phone rang, I ran with fear that this was the final call, but Dad hung in. Then there was a meeting that was supposed to be the “final decision” meeting. I was there along with Dad’s brothers and my own brother. The understudy of the aforementioned neurologist came in and started talking in matter-of-fact ways about how Dad was imminently terminal based on his examination a few minutes previously. Then he started talking about Dad’s “history of strokes” to which we all went “what?” as we told him that Dad had NO HISTORY OF STROKES. The young doctor, who was there to tell us to we should terminate Dad’s life support, looked at his notes and said: “well, at his age and condition I just assumed he has had strokes”.
The decision was made to put off Dad’s termination for several days and I went to see Dad for the first time in about two days since I had started playing the CD, and it was obvious that Dad was no longer the lump of yellow dead meat he had been two days earlier. He was looking around and responding to questions. One of the clips I had put on the CD, and perhaps the most important, was to tell Dad to respond to questions by nodding Yes or No. This gave him a binary way to communicate and to be communicated to. This may sound obvious, but I knew that Dad would have been trying to talk with a tube in his throat and it would never have occurred to him to try to communicate, and I doubt it would have occurred to the doctors and nurses either. When I came, in, there was an active if limited dialog going on between Dad and the nurses. I came in and I spoke to Dad and I could see in his eyes and by his responses that he was aware and fully responsive.
Dad had going into the coma in October of 2000, before the infamous election. Dad HATED George Dubya Bush. We used to watch the news and such programs as “Politically Incorrect” together and Dad would shout at the TV at Dubya. Dad missed the whole election and on this day, among other things I was telling Dad, I said “George Bush won the election”, and at that moment, Dad looked at me with a wide-eyed look of shock and anger that made his expression clear, and that was the moment when I realized that Dad was fully back and might yet make it after all.
There’s a lot more to say that I will say later, but to summarize, I ended up taking care of Dad for the next fifteen years. I was his medical advocate, driver, physical therapist, companion and more.
I forced Dad to eat, as I have no doubt he would have starved himself to death. He said all food tasted like cardboard and he got thin until his appetite eventually returned.
I took Dad out for walks and he got stronger. He never got back to the point he was at before the surgery, but he was far superior to the death that his doctors and nurses had predicted. If I had not done what I did for Dad, he would not have had the additional fifteen years.
In addition, Dad had several other medical conditions that if not for my advocacy, he would have died. Dad had lung cancer and I convinced a very reluctant surgeon to take the tumor out. He had said that Dad might die during the surgery, but I countered with saying that if he didn’t, Dad would definitely die in great agony within a couple of years. Dad got an extra seven years from that.
Dad needed a pacemaker, and again I convinced a reluctant surgeon to put it in, or Dad might have died in days or weeks.
Dad had a clogged cardiac artery in his neck, and I convinced a reluctant surgeon to put in a then-experimental stent to open up the blood flow to his brain, and afterwards, he became much more alert and aware.
There were multiple times when Dad would get pneumonia and I had to convince Dad to go to the hospital. One time, Dad was so sick he could not stand up. He had been throwing up so much that all that was coming out was a yellowish fluid. I told him to get in the car or I would call an ambulance, and Dad, as he was prone to do, started screaming NO and telling me what a terrible son I was, and when he heard the sirens he got extra angry and screamy, but he was so sick that the paramedics had to carry him out of the house, and he likely would not have survived the night had I not called for help.
This brings to mind a contrast between myself and my Uncle Jimmy, my mother’s brother, and how he took care of his father/my grandfather. My grandfather was an angry and cheap person. He did not go to doctors because, in his words, “they’re just going to take my money and I’ll die anyway”. In my grandfather’s final months, he was very sick, and among other symptoms, his testicles had swollen to the size of grapefruits. Yet, Uncle Jimmy was intimidated by his father and did not challenge him and as a result, his father died perhaps years before he might otherwise have died.
In the last couple of years of Dad’s life, he was in and out of hospitals. He would appear to go to death’s door, and then recover. He started having hallucinations and I had to dash to the nursing home in order to calm him down in the middle of the night. One night he was convinced that the nurses were “demons” coming to kill him and was throwing things at his nurses. That night Dad told me that as soon as he saw me that he realized he had been hallucinating. “I done shit in my mess kit” as he put it. Another time Dad was convinced he was in a crematorium and said he could see the word crematorium in big letters on the wall. Another time he called 911 to say he was being held hostage in the nursing home. For all these and other events, I would drop everything and dash over in the middle of the night for Dad.
Even in the last few days, it appeared that Dad might make yet another Lazarus recovery. On his last birthday in the nursing home, I spent a lot of time with him and he seemed well, although he got tired the end of the day. Then that night he got set back to the hospital where, finally, his doctors presented me with sufficient evidence that Dad was not going to pull out of it this last time.
Dad was 88 years and one week old on the date he died.
Dad’s funeral was on May 8, 2015. I did all the planning of the event while my siblings were obsessed with telling me what a worthless and lying cheat I had been. My sister emptied Dad’s bank account so that I had no money to pay the mortgage, and if not for quick payment of a life insurance policy, I might have been homeless in a few months. My brother sent me an email the morning after Dad died telling me that he would never help me ever and used the phrase “NOT ONE RED CENT”.
The four years since Dad passed have been the second worst of my life, only exceeded by the time after my Mother’s death and my cancer surgery. I have undergone constant mental trauma and anguish along with health problems and the constant threats from my siblings.
I miss Dad every day. The effects of my colostomy are with me every moment. I am still struggling to survive in spite of the actions of my siblings, who if they ever read this will claim with great vigor that everything I've said above is a lie and they did as much or more for Dad as I did and I was only with Dad for all those years because I was stealing his money and was too lazy to “get a job”. Yes, I am a bit bitter.
#jtg
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