The inevitability of death
1 May 2008 by Wendi Lewis under PeopleOk, it’s out there. I said it. Death. It’s not a subject that I go into with most of the people I talk to about mesothelioma. Even if we acknowledge that mesothelioma is diagnosed as a terminal disease, most of my conversations are about treatment options, support groups, awareness, and, ultimately, hope.
A couple of days ago I wrote about the closest topic I’ve seen along these lines, which still involved ways to find a silver lining in the struggle. Obviously, it’s a very necessary part of such a diagnosis. But it’s still about hope.
But today I came across an interesting essay, penned by Monica Sanford, a graduate student at the University of Nebraska-Lincoln, that is forcing me to look at another reality of mesothelioma. Its title, “Inevitability of death leads to freer living,” was immediately arresting. The author jumped right in with, “I thought I should write about death.” She went on to share that she has recently lost three people very close to her in fairly rapid succession - a paternal grandmother, a maternal great-grandmother, and her dear friend, Marilyn. Marilyn died of peritoneal mesothelioma at age 47.
As she ponders the very different lives and deaths of these people she loved, Monica wonders at a common thread - all knew they were nearing death, two as a result of illness, the other just sensing her time was nearing an end, even sharing with her great-granddaughter just a month before her death that she had walked with God, who showed her a waiting heaven.
That’s a truly unique aspect of this diagnosis. The knowledge, the clarity, the preparation for death. Everyone knows they will one day die, of course, but that day is always a long way off. Illness of this kind brings it into sharp relief.
In the post I wrote a couple days ago about silver linings, most people said the one thing they could credit their disease for was giving them a sense of the value of their time on earth. That knowing their illness was diagnosed as terminal gave them often times a will to fight harder and stay longer, because they saw with new eyes all the things they really wanted before they would be ready to go.
There’s a saying, “live each day as if it was your last.” But in the everyday hustle and bustle, it’s so hard to keep that in mind.
Monica’s essay reflects on faith, traditional Christian faith like that of her great grandmother, as well as her own, different, Buddhist perspective, and observes the different ways that her family members mourn, or celebrate, or deny at a loved one’s passing.
In the end, she finds that, for her, “The one thing I have that helps me cope with death in my life is not faith or family or hope. It is acceptance. Death is. Just like life is. Neither is good nor bad - they just are.”
But still, it hurts to let go.
to “The inevitability of death”
May 2nd, 2008 at 12:28 am
Hi Wendy. I just started reading your blog and am very happy to have come across it. My father fought a courageous battle with mesothelioma for about two years (from the time he was properly diagnosed and treatment began) and passed away on Ocotober 8, 2007. He came into contact with asbestos at the age of 15 when he left home to work at the Brooklyn Navy Yard after his family lost everything in the depression. He enlisted in the Navy at 16 (without parental permission) because he believed he had a duty to fight for his country. He served on many ships and even at the age of 78 remembered sleeping under pipes which poured white powder on top of the sailors. He also remembered many other instances of working with various types of equipment and products which created clouds of dust and particles which made it difficult to breathe. There was no protective gear issued, nor were any warnings provided. My dad was a member of the “Greatest Generation” and when he was ultimately discharged from the Navy, he continued to work hard and honestly. He was loved by many and liked by all. He always made sure that others knew how important they were to him - whether they were people who washed his car or delivered his newspaper, or perhaps the law school dean he met at my graduation. His grandchildren were his pride and joy - three girls and a boy who he instilled the values of trust, honesty, kindness and forgiveness. He accepted his illness with grace but fought hard even after the different chemos stopped working for him, hoping that perhaps the experimental treatments he underwent might somehow help others down the road. Now,finally after I have honored my father by sharing his story, I have come to the reason I decided to write to you tonight. It is 2 a.m. here in Connecticut and I can’t sleep - it happens every night. I cannot accept my father’s death even thouth we knew he had a “terminal illness”. Even though we knew the statistics and I have done all the research and spoken to many doctors, researchers, nurses, etc. My father still had time. He wasn’t supposed to die the day he died. Perhaps the inevitability of his death was certain. We were hoping for a miracle of course. I became even more spiritual than I had been before. But my father was holding his own. My husband and I were concerned about leaving for a weekend to visit my son at college for a lacrosse tournament. My father’s doctor assured us that he was fine. He was admitted to the hospital for a possible infection but as the doctor said, that was the best place for him - he would have 24/7 care. My mother and sister would be at the hospital and we decided to watch my son play. On the way to the school, we had an eerie experience. A truck came up beside us with a sign that read “NORM.INTRANSIT”. I made sure my husband saw it and he reacted the same way I did even though he is not as spiritual as I am. He asked if I wanted to return home. I said no - the doctor said there was no reason to worry. We were in constant touch with my mother, sister and the doctor left in charge of my dad (his doctor was at the MARF conerence that weekend). Things started to go downhill rather quickly. No one had any explanation but my father’s fluids could not be balanced. No one at the hospital seemed in control. Interns and residents would not take responsibility. What we could not understand was that my dad had a specialist for every organ in his body at that hospital and not one was called in to check on him. The doctor in charge who was communicating with us (we were 6 hours away) kept telling us everything was okay. This was not what we were hearing from my family. We decided to leave on Monday morning so that my son could come home with us to see my father and at 8 in the morning we got a call from the doctor that “We better get there fast”. Obviously, things were pretty bad. On the drive home, after making a stop for gasoline, I looked to my right and there it was again, a white truck with the logo “NORM.INTRANSIT”. This time both my son and husband saw it. They were not surprised, they had gotten a phone call at that last stop - my father had passed away and were waiting for the right time to tell me. This was it. We did get to see him when we finally got to the hospital and I was able to talk to him, to make some promises that I will continue to fight for him and fight for a cure for this horrible disease. But - I will never be able to accept his death. I will never accept that a major hospital in a major city with a major cancer center that has a mesothelioma center cannot explain why a patient who was fine except for a “slight infection” which they weren’t sure of, ended up dying and they cannot give us a reason for it other than saying that he was “terminal”. They have even gone so far as to say, maybe it was better this way because he never reached the really horrible stages of the disease. I will always be greatful for what the team of doctors did do to help my father extend his life and keep him comfortable for as long as they did. But acceptance of the way he was treated in the end and the manner of death and lack of respect for the “terminally ill” patient and his family is beyond me at this point. My father wanted to die at home - his home was my home for the last two and a half years of his life and arrangements had been made for that. He never got his last wish.
May 2nd, 2008 at 7:22 am
Hi Stacey,
I just wanted to thank you so much for sharing the story of your father. I can tell from your description of his life that he was an amazing man, and how much you loved him. Thank you for honoring him by sharing his story and helping to bring attention to the people who worked so hard for their country and were affected by Meso. Your story about his passing gave me goosebumps - NORM.INTRANSIT. Wow! All I can say is thank you so much for posting this story and for sharing your passion for finding justice for the people who suffer from mesothelioma. You are right - their time is too short, and it SHOULDN’T be that way. Thank you again, so much, for speaking out. God bless you and your family.
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