This is something I started writing 10 years ago. I have added to it over the years and decided to publish it here on my blog today in honor of my dad. Thirteen years ago today, he transitioned from our physical world to awaken to the reality of eternal love. His humor, brilliance, love of learning, struggles with fear and anger and unvoiced, though undeniable love have impacted my life and helped to make me the person I am today. Thank-you, Papasan for all your gifts – I love you.
It’s Not Just Semantics
One Father’s Day, as I was going through boxes with my Great Aunt, I found a notebook – one page filled with writing. The rest of the pages in the book were empty. It was in the middle of a spiral bound pad, but open to this page. I did not recognize the handwriting immediately, but after reading a sentence, I knew my father was the author. He was expressing his notion of semantics: “General Semantics is not concerned with words, but with what people do with words and with what those words do to people.” As the paragraph goes on, he reflects on the inadequacies of semantics. The words cannot accurately reflect our multiple and confused emotions and perceptions. He does not hold language fully responsible, however, noting that our perceptions are only one facet of a multi-arrayed reality. What caused him to write this, I can’t say for sure, for it wasn’t dated. I expect it was written some time after he was diagnosed with cancer.
How typical of my father. He could not find the words to express himself, so he expressed his thoughts about the inadequacies of words. I cannot recall a time in which dad ever said “I feel…” Oh, he could articulate his thoughts, and he had thoughts on everything: politics, his employers, his children, his siblings, the economy, education, television shows, what he read. He was a truly analytical thinker and, I believe, one of his greatest joys was sharing ideas and debating points. Until, however, the cancer metastasized to his brain. For about 6 months, he could not write and had great difficulty finding the word he wanted to say. Suddenly he was left with nothing but his emotions.
My dad cried when my brother Jim died. It was the only time I had ever seen him cry, until the tumors on his brain stole his language. He cried almost every time I saw him while he was receiving radiation to his head. He never shared the reason or impetus for his tears. I am not sure he even knew. The amazing thing is, his impending death was only one of the things with which he was trying to cope. He was facing his own feelings about his mortality, and he was also dealing with the guilt of adding to the families’, and in particular my mother’s, grief. It had only been 5 years since Jim died, and dad was diagnosed while Jeff was in the hospital. For a year, dad and Jeff were both critically ill. It would turn out that dad would out live Jeff by 3 ½ years; some say out of pure determination.
No one even knew enough about AIDS in 1982 to be cruel yet, but all three of my brothers who were born with a bleeding disorder were already diagnosed as being HIV positive early that year. Given the prejudice and ignorance my brothers encountered through out their lives, we knew to keep this information to ourselves. We did not realize how deadly this ignorance and fear was until Jim was hospitalized for a spot of pneumonia on his lower left lobe in 1987. It was 40 days after he was diagnosed with “Full Blown AIDS”, and 3 months after he was married. In the hospital, he was placed on a quarantined floor, for people with AIDS. The doctors and nurses wore gloves, masks and aprons any time they were in his room. The nurses refused to clean him when he vomited. My sisters-in-law and I were the only ones who bathed him. My brothers had been in a hospital more times in their lives than most people had been to the movie theater. They had always received high quality care, by doctors and nurses who kept mom and dad informed about what was going on, and were always treated with dignity. This was our first experience with an adult hospital, and with a staff paralyzed by fear. As we sat, in our ignorance and faith in the medical profession, Jim died. We begged for help when he was struggling to breathe and after he used sign language to communicate “help me fight” – no-one informed us the doctor placed a no-code in his file. One doctor was reported to say that it was for the best that AIDS patients go quickly, as it was such a heinous disease.
Dad expressed for years afterward, what he should have done to that doctor. He had always demanded the treatment he expected when Jim was young; he should have done it then as well and not trusted the doctors. I imagine his guilt and regret stewed in him, but it was only expressed by a passionate cynicism and active disrespect for all in the medical profession. What a conundrum. He hated and distrusted all doctors,and now depended on one to keep him alive. And he couldn’t die. He would do anything to avoid adding to mom’s pain and loss.
Just as dad was recovering from 11 months of chemotherapy and radiation, as his stamina and skills were returning, he buried his youngest son. Jeff was the last of 7 children, born twelve years to the day of the birth of the first. Phil was really quite disappointed by this birthday gift, as he already had 3 brothers, and really wanted a new bike. Having so many children in such a short time frame, not to mention in such close quarters – we lived in a 2-bedroom bungalow – can create a bond. Add to that the life and death incidences regularly experienced by three of the siblings, and the fear and ignorance demonstrated by those who do not understand the nuances of hemophilia, and you have the perfect recipe for a close family. We stood by one another, and would literally go to the mat, any time someone threatened one of the clan. Jeff was probably the primary beneficiary, having 6 older siblings to watch out for him. He was also a very cute little boy and easy to spoil.
He learned from our constant care and attention to merely expect it. He was not a spoiled brat, he was very generous and typically reciprocated kindness done unto him. He just simply couldn’t imagine that anyone would be anything but kind and attentive to him. He was very polite in his requests and extremely gracious in his expressions of gratitude. But he still drove the nurses crazy! He once actually asked them to peel the grapes for him, because the skins irritated his digestive system (due to a very nasty and potentially fatal infestation of parasites). They, of course, were appalled at the request – he simply got his feelings hurt by their indignant response. When I think of the pain and excruciating treatments he endured without complaint or self-pity, I considered it a small favor to ask. I frequently wonder how it was for them – dad and Jeff. To each be so ill…to be watching each other die. I think Jeff always believed he would die first. He never really spoke about his feelings about dad’s cancer, though he discussed his feelings about his own death frequently. At first he spoke of his fear, his regret at not finding a love to share his life, not being able to be a father who played with and openly adored his children. He never implied a sense of the unfairness of it all, just the sadness about some of the things he would miss experiencing. This all changed after he experienced heart failure and was resuscitated. He remembered that during the time the doctors and nurses were working furiously to revive him, he had a vision of Jim in a lovely garden. He recalled an intense experience of no pain and a longing for Jim. He said the colors were more vivid and beautiful than he had ever seen – that there were no words to describe them (That old problem with semantics, again.). He related to me that he was no longer afraid, or even sad. He was in fact, grateful – he now had something to look forward to. He remarked that he had not felt that sense of eagerness, nearly excitement, for years. He noted that he was also lucky, because he had a wonderful gift, to be able to say goodbye to everyone, to share those words we so often hold back. Jeff died 2 weeks later, after having shared all of the thoughts and feelings he felt important, with those he loved and respected.
This second loss was so different than when Jim died. We were able to say “goodbye” and to take care of any unfinished business. I was so relieved that Jeff was no longer in pain. I was comforted by his vision of Jim and the knowledge that he was ready to go and was no longer fearful or sad. Yet, I didn’t feel any better. I was once again lost in a sea of grief. If I was struggling with this loss, what was it like for dad?
I really can’t imagine – to know you are dying and to bury your offspring, only 5 months into his 21st year. Dad never expressed his feelings – regarding the loss of his sons – or any other that I can ever remember. Dad never told us he loved us. Even the night he died. I sat next to his bed. He was drifting in and out. He was in excruciating pain. He could not stand up to relieve himself and mom was not strong enough to support him on her own. I know he was so ashamed to be unable to meet even his most basic need. I am not sure if it was that shame and embarrassment, or if it was his deeply buried fear of vulnerability that came between us, preventing me from holding his hand, even as I watched his labored breathing. At his request, he was given an increased dose of painkiller. We were certain that it would be his last night – the pain killers cause depressed respiratory capacity. His tumors were slowly suffocating him; the side effect of the drugs would likely push him to the edge. He had already signed an order requesting no “heroic measures” and no form of resuscitation. After receiving his dose of medication, he gently thanked me with his eyes. As his breathing became deeper, with longer intervals between each breath, I sat on my hands and deliberately chose not to wake my mother until I knew he was nearly gone. It was the longest half-hour of my life. My most lonely and tortured minutes, and the most intimate connection I ever had with my dad. As I sat there, I grieved not only my loss, but for the three words he had still never said to me… “I love you.”
Dad always said that if love was unconditional, it was of little value. Only those things that are rarely given, and especially those things that are earned, have value. Sitting there, counting the seconds between each breath he took, it felt like a cop-out to me. All these years later, as I write this, I see some wisdom to his perspective. While that which is given freely and unconditionally is not utterly worthless, it is the depth of one’s values and the trueness of one’s character that sets people apart. Actively making the choice – deciding if and when to acknowledge the value of these attributes – is a much greater and deeper personal commitment.
Though I personally choose to nurture and express my emotions fully and unconditionally when they touch the deepest part of my spirit, I agree with dad that it is important to analyze my thoughts and make conscious decisions about the characteristics embodied by, and the ideas expressed by others – to choose to acknowledge and respect those I value. I have learned that it is possible to love someone and not have a deep respect for the choices they make, their lifestyle or their values. It is interesting because in my experience, the love is not any less valid or true or genuine in these cases. However, when there is a strong sense of respect associated with the loved one – there is something different. It feels more spiritually intimate somehow – and maybe safer, less vulnerable. As I continue to experience the joys and pain of life I have both a better understanding of dad’s perspective and a greater sense of sadness that he was not able to open himself up as much to love as to respect. I know, in no uncertain terms, that dad loved me wholeheartedly. I still have a sense of loss for never having heard him say it. I have yet to determine if that is my Achilles’ heel…or his.
It has been 22 years since I last saw Jim’s infectious smile, 16 since I touched Jeff’s beautiful face, and 13 since I said farewell to my dad. Yet, I still feel the impacts they had on my life and I continue to learn from them. It may seem like semantics, but even though they have left, they are not gone.