Revisiting the Loss of My Mother

I read a blog a couple of days ago by a Billy, a 30-year-old man who was just back from visiting his mother somewhere in Virginia. It was a quality-time visit. There were some photos and one of the things that stuck me was how he had commented that his mother had insisted on picking up the check when they ate out and wanted to buy him some shoes or something. I just wandered off in time for a few minutes. I might as well have just been telling the story myself about my mother. I ended up sending an email to him to tell him how lucky he was and he returned one in kind to me thanking me because we don’t often realize just how much we love what is in front of us at any moment and no matter what we say, we take the things we have and love for granted until the day we no longer have them.

I am not certain why I am writing this except that it is cathartic and it jogs some of the wonderful memories that were hiding behind the pain of my loss.

My mother came from a very large family but was raised by her older sister, Annabelle (named after Annabelle Lee, notorious of the Edgar Allen Poe poem) because her mother died when she was just three years old attempting to give birth to twins. During the birth, apparently there were complications and not only did they lose the twins, they also lost her mother. I also never met my maternal grandfather who died before I was born but never forgave the Catholic doctor for not sacrificing the life of the babies for his wife and by doing so, lost them all. My mom and her sister shared a special bond because of this maternal relationship. My mother’s sister came to visit us when I was only five or so but several years later, she died of breast cancer. I couldn’t have possibly understood the pain that my mother suffered with her death.

A year or so later, my grandfather on my father’s side, died of leukemia. Again, I didn’t understand the death, but the loss as experienced by my father was not so significant. My father handled it much differently and years later, he told that he and his father had no real relationship and he felt the loss as a placeholder only – well, he didn’t use those word, but I knew what he meant; his father was not really part of his life. My father doesn’t verbalize things like this very well anyway.

Fourteen years ago, my mother went in for her regular exam. She always had mammograms and pap smears because of the loss of her sister, Annabelle. Her mammogram came back positive for a tumor. It was a small tumor, caught early and everything would be ok. She went in for surgery and they removed it, about the size of a pea or slightly larger and while they were there, they found another small tumor, just starting. They removed it too in a benign sounding operation known as a lumpectomy. The removal process was quick and relatively painless followed by six or so weeks of radiation therapy on a daily basis that my mother hated and a prescription for Tamoxifen, an estrogen therapy drug that would go on for years. It was all so positive.

Five years went by. Five years is significant in cancer patients because it is usually the time when the doctors drive the stake into the ground and say it is very highly unlikely that the cancer will ever return. A year later, however, they found cancer in the other breast. Again, there was a lumpectomy and the removal of many of the lymph nodes under her arm. The lymph system uses tubes throughout the body and cancer cells like to hijack these tubes for the spread of their disease. Affected nodes can now be more accurately detected and removed but in my mom, they removed almost all. There would be no radiation, at my mother’s request. The first time around, it had burned her skin and made her suffer. The doctors said that radiation only improved odds of killing uncollected cancer cells at the site only slightly and so after some hand wringing and discussions with our family, she opted not to take the radiation. No chemotherapy. It surprised me but that is the course that her doctor and her chose. They placed her on another drug, Arimidex, another estrogen depleting drug. It turns out that my mother’s treatment with Tamoxifen was early after the drug was developed. They didn’t realize that its effectiveness was reduced after about five years and I didn’t realize how serious my mother’s circumstances would eventually become. I guess we can never predict the fury of the storm until we are in the middle of it and by that time, it is too late and we can only make what course corrections we can and ride it out.

Another five years went by and I remember speaking to my mother on Sunday morning as I always did but on this one morning it was different. She told me that she had been in for a physical and they had “found a little spot of something in her lung” and a “little spot of something in her upper leg.” “What kind of spot?” I asked. “They’re not sure exactly, but it’s nothing to worry about,” she said. “Everything’s all right?” “Well, of course. Nothing to worry about.” Repeated phone conversations, visits and doctor’s checkups revealed, “the ‘spots’ were not progressing and everything was all right,” she told me.

I hate the cold. I moved from the northeast to Florida partly because of the cold but mostly because of the gray. After autumn with its vibrant northeast color, follows gray, then white, then gray, then “dirty spring” giving way to summer. Gray is a miserable season where everything is sleeping or dead. The sky, the trees, the roads, the splashes of road snot on the hills of gray snow between the gray street and the gray sidewalk. Gray is miserable. I always avoided going home in all but summer. I decided instead, this year to make at least a couple of trips home, the first in 2001 for Mother’s Day.

It was a nice visit home. My mother was always spinning, always involved in something. Even with the invader in her body, she didn’t stop doing. She was involved in the Orchid Society in the “Gray” town. She founded a Haiku Society in the “Gray” town. She was an officer in the University Women’s Club in the “Gray” town. She was involved in her church. She was involved in Writers and Books and on and on and on. She was always a brilliant spot in the gray town.

The Sunday before I was to leave she asked that I go to church with her. You have to understand that her church was Unitarian and my mother was not religious. If you are not familiar with it, this is the church that mostly intellectual people attend where being spiritual trumps being religious. I don’t do church, even that church, although, if you must go, that’s the one. That’s a whole other story that I may get to one of these days. But, she asked me. I said, “If I were hitched to a team of horses, I wouldn’t let them drag me but because it is you who has asked me and because it is Mother’s Day, ok.” She was elated and I was happy to see her happy.

Ceremonies there are interesting. I sat next to my mother on one side and my godmother, on the other. They had an open microphone at one point where people could get up and share with the congregation their thoughts on why they considered themselves “blessed” – lucky, whatever you want to call it and she got up and said how she was so happy that her children were there (my sister attends regularly) and that her “fifty-year friend”, my godmother, whom my parents met when they first moved to “Graytown”, were there to share her Mother’s Day. It was pretty moving actually but I guess you had to be there to get the emotion that went into the thought. I left a day or two later.

Mom’s birthday/anniversary was early in July and when I called her, she appeared a little quiet. Always sharp of mind, it seemed odd. I spoke to my sister later and she said that they had gone to my godmother’s for a birthday dinner. My sister sent me pictures. It was the first time that my sister had noticed a change in her demeanor. In the pictures, she looked a little spacey too.

In early September, my partner and I booked a cruise with his sister and brother-in-law (who is also my very good friend). They live in “Graytown” too. They flew down; we jumped on the boat on Sunday September 9, 2001 for a hard earned week in the sun and fun. Coming up from breakfast on the elevator, we heard that a jet had crashed into the world trade center in NYC. We rushed back to the cabin to flip on CNN in time to see the second plane hit. We’ll save that story of loss for another time.

When we got back into port the following Sunday, I called mom as I always did on Sunday morning. There were other calls of course, but that was the “let’s catch up on what’s-going-on on your end, call.” I had noticed that during our conversations that she would frequently forget her place. She would lose her thought of the moment.

She seemed a little distant.
“So, are you coming home this fall?” she asked.
“Of course, mom. I’ll be there before the snow flies.”
“I think maybe you should make it sooner than later,” she said.
It hit me like a bus. I hadn’t grasped up until that moment what she knew but we hadn’t ever discussed. We never discussed. It just wasn’t something that she wanted to do. No matter how close we were. No matter how much I loved her and she loved me, we didn’t hint at it and for all my denial, we never discussed the inevitable.

I flew home amid the heightened security following 9/11. I arrived in Graytown. My father picked me up at the airport. Mom wasn’t with him. Usually it was she that drove – liked to be in control behind the wheel of her car. When we arrived, she was sitting in what I used to refer to as her nest in the living room. It was one end of a comfortably worn couch with books, pencils, pens and scissors, a stack of magazines here, a stack of newspapers there all within easy reach along with the semblance of her next project, whatever it might be. It was command central. It was also, incidentally, the exact spot that she had been sitting in when I had ‘come out’ to her and my dad, years before.

Her warm blue eyes were clear but they lacked the sparkle that was characteristic of her and she appeared confused, even a little distant. I kissed her and gave her a hug. She was feeling pretty good. She squeezed out a smile but she wasn’t there. She wasn’t really in that room.

I discussed with my sister the medication that she was taking. My sister told me that she had rapidly declined, that she had perfectly lucid moment but at other times, her mind was absent. There was a nurse coming over on a regular basis and the plain fact of the matter was that my mother was dying and there was nothing that could be done to change that fact. My mother was insistent on not having my father or my sister give me a bad report of her condition so that I wouldn’t worry about her without being able to do anything being over a thousand miles away. In my denial, I studied the medicine she was taking and thought that perhaps an interaction was creating her confusion. I discussed it with the nurse who was very kind and understanding but explained that while some of the medication might have an effect as I was describing, the progression of my mother’s disease was at the heart of the problem. It seems that many forms of cancer lose cells that take a remarkable path through the body. Cancerous cells are larger than average tissue cells and they somehow are able to migrate through the membrane of blood vessels, float in the bloodstream until they arrive somewhere else and get stuck (usually in the brain, lungs or bones because these are three places where the blood vessels continue to get smaller and smaller until the cell won’t fit any farther) where they migrate again into the surrounding tissue and instruct it to grow uncontrollably in a non-organized manner. The process is called metastasis and the cancer that occurs in one of the new sites is called metastasized breast cancer rather than lung cancer, or whatever. At least, in my crude, non-medical understanding, this is the way that breast cancer metastasizes and kills its victim.

The weather early in October in Graytown is potluck. You get gray skies, possible sprinkles of snow and the doom before the pending winter or you can get the brilliant color part with the leaves changing along with the azure blue sky and warm breeze. There is a certain smell in the air too. It is a smell of anticipation but not necessarily in a good way. I used to tell my mother it smelled like a time of dying. I wouldn’t have guessed how true that perception would be manifested. My mother’s temperament paralleled the change in the weather while I was there that week. I never noticed it until now – perhaps it was just coincidence. She actually improved the whole time I was there. On the weekend when the fall weather was quite beautiful I told her, “Mom, let’s go for frozen custard.” I managed to get her into the car and the whole family; Mom, Dad, sis and me drove to Graytown Frozen Custard in probably the last week before they close for the season. The sun was shining. The sky was blue. The day was warm. The frozen custard was delicious. My mom was smiling. It was a memorable outing. The last outing.

I had stayed a week and it was time to get back. I had packed all my stuff and my bags were in the car. I sat on a loveseat with my mom and I hugged and kissed her. She was a little distant. I’m not sure if it was because of the confusion or because she knew that she didn’t want me to leave and didn’t know how to tell me or not to tell me. I told her I loved her and I would be back for Thanksgiving. It was only about four or five weeks away. With that, I went to the plane.

On Sunday, October 28, 2001, I called home in the morning as I always did. My dad picked up the phone, which was unusual. Mom would always talk to me first and then dad would fill in his version or the details that weren’t important to her. I asked why the different drill. He said she couldn’t/wouldn’t talk to me. She had been having a lot of problems – extremely restless nights, some pain, and some paranoia. She was sleeping on the couch in the living room and had rolled onto the floor. She couldn’t get up and he couldn’t lift her himself. He called their neighbor from across the street at 4 a.m.(a god sent family) who sent their two teenage sons over to help get things in order. My conversation with my dad was brief. He was in denial and wasn’t coping well. I hung up and called my sister. She thought it would be a good idea to book an earlier plane ticket home, which I did.

Monday morning, I was planning my day and the phone rang. It was my father in tears. I had never heard a whimper from him – solid oak.
“If you can come, you need to come now. This may be the end.”
“I’ll be there,” I said and hung up the phone.

I called my sister.
“Last night, mom wouldn’t go to bed. She insisted on sleeping on the couch again,” she told me. They had had a hospital bed brought in and set up in my sister’s old bedroom so that they could pull up the rails at night to keep her from falling out and hurting herself. She wasn’t having any of it.
“I thought if we could get her to the room everything would be all right. I had her sit in that office chair she likes with the casters on it but she grabbed a hold of the door jam and wouldn’t let go. I couldn’t take any more. You don’t know what it’s been like the last couple of weeks. I told her that the she could either go to bed or we could take her to hospice. She chose hospice. They sent an ambulance and she was actually very cooperative and talkative when they arrived.”
My sister went on to say mom had been irrational, combatative and was now having trouble controlling her body. She had spent the night at hospice with her and had come home to shower, change her clothes and go back. I told her I would call with my travel plans as soon as I could get a flight.

I hung up and my world fell apart. Someone let the air out of my lungs. I was in panic. I told my partner who started calling airlines.
My friend Alan called and I burst into tears as I came unglued.
“My mother is dying and I have to go,” I told him.
“What can I do?” he asked.
Of course there was nothing. Within an hour and a half, I was winging it back to Graytown.

I arrived at the Graytown airport just five hours after I had started to travel. I walked up the concourse to where it intersected the terminal and my father and sister were both there. It was a bad sign since that meant mom was alone. The look on my father’s face was unmistakable.
“Mom died,” my sister said.
Please let a bolt of lightening hit me now. All the angst, the guilt, the tension and the sorrow burst forth in a deluge of tears. We stood in the airport terminal embracing each other and crying.
“She died around 5:30. I was with her. She just stopped breathing. It was pretty peaceful,” my sister said. “I didn’t know if you wanted to see her or not so I asked them to leave her in her room until you got here and we could figure out what you wanted. We can go there now.”

When I was a child and my father’s father died, my mother refused to let me see him laid out at the funeral home. When she had been young, her father had forced her not only to see but also to kiss a dead relative. It lived with her forever. I did see my father’s mother in a funeral home. It was the first dead person I had seen and the last that I had wanted to. I had no wish to see my mother dead. In her mind, the vessel of her body would have been empty. It was her spirit above our heads that she would have wanted us to remember. Closure came from taking her to have frozen custard a few short weeks before, although I didn’t realize it at the time, I was actually saying goodbye then.

My sister called the hospice and made arrangements for the body. My mother would have no part of being buried. Why waste the space? Besides, who wants to rot in the cold ground?

Over the coming days, I cried and cried. I started going through some of her things. There are reminders everywhere of who she was as a person and who she was as a mother. Being the writer that she was, she annotated all sorts of things. Among them, I found notebooks where she had kept journals of her feelings and she never shared any of her fears or concerns with any of us. She was a most remarkable woman. I did, however find that more than anything, she was terrified of being bedridden for any length of time and lingering as a burden on us, her family. I found references to her joining the Hemlock Society (who espouse suicide in the event of tragic disablement) only a couple of years after I was born. Of course, now, I am reliving some of the pain. It has been almost three years since she passed on and I can speak of her now without uncontrolled sorrow bubbling up into my throat and eyes. She lived a full and wonderful life and the world is a much better place for her having been here. I have since come to understand that there is a natural order to life. Unfortunately, death is part of it as is, sickness, pain, love and abandonment. It is William Shakespeare’s “thousand natural shocks that flesh is heir to.”

She was cremated as she had wished the week she died and my sister and I planned a memorial service at her church in December. It was enough time to put a reasonable plan together and I flew to Graytown with my partner again that winter to bid her a final farewell. Remarkably, the day of the service was fair and calm. There was no snow. There was no gray that day. Behind the church on a sweeping hill beneath the trees there’s a large retaining wall with a capstone that bears an inscription, “To Live In The Heart Of Those That Love is Never to Die”. It marks the memorial garden for those members of the church who choose the same cleansing by fire as my mother. Our family, my partner included, as he had become as much a son to her as I was, having lost his mother to colon cancer when we was quite young, spread her ashes on that December day.
My mother had many friends and the church was filled with people who had come to say their farewells. There were many funny stories, many sincere and some sad. My sister thought that she and I had a unique perspective on having been the children of such a youthful minded, progressive woman and so we delivered a memorial, integrating our childhood memories alternately. My mother’s memorial from my sister and I follows.