Sharing with my followers a page from my daily diary…
A myeloma diagnosis can drastically affect the quality of one’s life. The disease gives me a feeling of isolation and being alone.
Myeloma has had a significant effect on the quality of my life, as well as my emotional well-being. I am managing it and have a close and meaningful relationship and conversations with my doctor. She has me on treatments that work and is slow in progression. She is my “rock.”
“Quality of life” is a broad term that describes a range of topics on exactly how myeloma affects the quality of my life or anyone’s life. Despite the impact of myeloma, I do everything humanly possible to make living with the condition more manageable.
About 99% of the time, I feel anxious and depressed, and stressed. I find it hard to exercise; mostly, it is slow walking, along with everyday chores in my apartment. I have no social life; it is difficult when you must ask someone else to drive you anywhere, including doctor and treatment appointments. I feel that most days, I am isolated and alone.
My circle of people has grown smaller over the past two years. I try not to let that stress me out, as stress is a killer too. On top of all the things that harm one who has MM is the unrelenting pain; it never goes away; it goes up and down in degrees. Like the medical team that works with me, always ask on a scale of 0 to 10 how your pain is. I always answer that it depends on what time of day it is and what I have done to aggravate my body. On a good day, my pain level is a 5; on a bad day, it is off the charts.
I know my doctor is trying to slow down the disease. I have great emotional support from most of my children and grandchildren; they have become why I continue to fight. The disease has also caused the family to pull away. I do not fault them; watching a loved one slowly die must be very difficult. My sons and grandchildren allow me to talk to them about my dying. Everyone should stop thinking that death is all I truly know to be certain in my life. Dying is like a divorce; no one wants to talk about it, hoping it will go away, that time will take care of it.
I write this to hope that if you have someone in your life that has or is dying from any disease or reason when these relatives ask, you say, “I am OK?” Well, that means that we are in control of the pain. It never goes away.
The dying individual does not want pity; they do not want anything but your love. They want ask for anything but listen if they talk to you. Take the time to remember that they were once active people who have been thrown into the pits of fiery hell because of their sickness.
Note: This short prose may be a bit raunchy. My mother had a hard time growing up the oldest of nine children. However, the story is true and has been told to me by my mother many times. The mid-1920s was when people were no different than they are today. The difference was many lives were built on generations of secrets and lies. She was in her eighties when I last heard it. It made me smile then as it has today. E.
The Mountainside Whore
At my age, remembering the past is no small feat! However, my mother was the oldest of nine children, and with her daddy’s free field hand, she was made to quit school in the third grade.
She was allowed to go to Hartselle shopping on many occasions with her daddy. She had spoken of how these were the only times she felt free, alone with her daddy, free of taking care of eight children. Her mother was always pregnant. Being the oldest, she cared for the house, barn, and field chores, as a midwife and cared for the children.
Her mama came from money. She married money; within time, her daddy had sold off all the lands he owned to take care of his habit of drinking and women. Her mother was “lazy” when a child was born; Ruth’s duty was to raise them. Her daddy was also “lazy,” home long enough to get her mother pregnant, eat, and leave orders for Ruth to do while he was gone.
On that day, her daddy told her to stay outside the store, that he was getting something she could not know about.
“You sit outside, sister girl.” He mumbled between spitting the plug of tobacco that left permanent stains on the edges of his mouth.
She had always been called “sister girl,” he went into the Hartselle Mercantile, where he came out with a big box later during one trip. She thought he had bought something for her mama. She watched as he later hid it in the barn’s loft; he knew her mama would never go up there. She was afraid of snakes that sometimes crawled up there to keep warm.
Later, Ruth crawled up in the barn loft, digging around until she found the box. Inside was a beautiful red dress, shiny like a new penny. She put it back, knowing that her mama would be so surprised when he gave it to her. My mother, a scrawny little girl, turned into a demon the following Sunday. She could not hold her anger. She stood on the front pew of the tiny, whitewashed church, demanding that it was her mama’s dress and the “Mountainside Whore” was to take it off. Knowing what was in the box, the “Mountainside Whore” wore the red dress.
“Take that dress off, you whore; it’s my mama’s.” It felt like her voice was echoing throughout the Tennessee Valley.
The entire congregation turned to see who she was screaming at; mostly, they could see a red streak running out of the church with a scrawny little girl chasing her, tiny fist in the air. That was when the entire family left the church in silence. The preacher raised his hands to the choir, and instantly all anyone could hear was “In the sweet bye-bye.”
Her mama never returned to church again. Yet, it didn’t stop her daddy from visiting the Mountainside Whore in the red dress on Saturday nights. When my mother told this story, she would call her daddy a “Whoremonger”.
The young woman regaining her composure, went back to church every Sunday. She lived way into her nineties and asked to be buried in that shiny red dress. As she aged, she would often tell her life story on the mountainside; it was hard to believe as all most could see were the wrinkles and dark aged spots.
She was a beautiful woman and had a grand funeral from what she saved through the years, an open casket for all to see that she was the young girl in the shiny red dress. Who would want anyone who was only known as the “Mountainside Whore”? She is never married.
Over this past year, I have shared with you that I have been diagnosed with Stage 3 Multi-Myeloma. I have tried to stay focused on writing a memoir, and I have taken from those written pages and created posts on my blog. Cancer is a teacher; cancer changes one’s way of thinking; cancer humbles; that is my description of cancer.
Some time back, I posted about removing toxic individuals from my life; cancer has taught me to value my time. My time is precious and short; I cannot give the time that I don’t have to people who are toxic, greedy, and thinks of only themselves. I should have done this fifty years ago, but it took cancer for me to realize that it was I that needed to consider a different way.
We all have people who come and go during our lifetime, a scattered few walks and talk within a cloud of toxicity, conversation and actions. Removing them is like being tied to a tree with a noose around your neck. You cannot remove the rope; the noose tightens around your neck. Toxic people live in a cloud of lies, and you may be unable to escape in writing what may be my last book, filling the pages with things that I could have changed. Cancer has taught me, too late, what really matters. The pain located in my spine humbles me as well. It shames me that I have allowed parents that did not love me to keep me from returning. Being hurt was better than nothing at all. In the last three years of my mother’s life, she finally told me to stay away.
An entire chapter of my memoir focuses on my birth, which was not what my mother wanted. She hoped that I would die at birth. My daddy being under her control, rarely won a battle with her. I was raised by my aunt until the age of three; it was then that my daddy brought me back into a house filled with unhappiness and hate. I learned from his gentleness and love when he was allowed to show it. After marriage to a man I did not know, another southern thing that should have been outlawed, I keep returning to that house hoping to see a measure of love from anyone. My sister, raised until the rules of our mother, rebelled.
My mother loved her unconditionally but wanted to control her, which she never accomplished. My sister left, returning years in-between. I kept returning year after year, hoping to break through that bearer. I was filled with love for family. I did recognize that there was no love and that I was unwanted, but all those years of knowing taught me nothing.
She, by then, had brought another child into her life, an adopted one. I believe that it was an effort to “do over.” What she did not accomplish with my sister. That entire family of daddy, mother, and sisters lived within a cloud of toxicity that would last them all their lives. I was finally told to not come back several years after my daddy died. I never returned until her death three years later. However, those left behind kept the toxicity alive. My relationship with those left after their death was on and off, the greed shown at my mother’s death was so outlandish I sometimes wonder if people would believe it.
Multi-Myeloma decided to attack my spine. It was undoubtedly brought on by stress, a lifetime of anxiety that I allowed to get into my mind. This mental pain I have lived with all my life finally turned into a physical one. My first mistake was to continue to live within a family of greedy people; the second was to stay. I am not saying that these toxic family members caused my cancer, but their actions have not helped it throughout the years either.
They continued to live as entitled individuals and soon discovered no one would continue the entitlement after their mother died. I cannot see that they have learned anything; their mother continues to live on their shoulders, dictating the rules from the grave. Greed was their life, letting someone else carry the burden of their living expenses. I doubt they ever learned anything; my family’s life still belongs to someone in the grave. When the “giver” died, the individual turned more toxic than ever before and appeared to have no clue how to live. I continued to go back when allowed; I, too, had learned nothing all those years. The relationship was so damaged by their fear it could not be repaired. It is always a mystery how money can break apart people you thought to love you and that you did love. Cancer taught me a new way of living, one of truth. I never wanted anything but their love; they all withheld that too.
I worked hard to keep the relationship alive, but I apparently did not come to the rescue financially, and communication ended. I believe it was thought that I had money. I worked to make a living all my adult life; my mother thought I had money. She never felt anything else and asked that I continue taking care of what she deemed to need. She did not want me, but she did want me to step in her shoes when she died. She asked that of me many years ago; however, in those final years, hours she had me banned from the room until she breathed her last breath. I was told it was all the family, but who knows, and now who cares?
This has been a long time of teaching me to not run after those who do not care unless you extend a hand filled with money. Toxicity, the poison that ran through my family, was not love; it was simply greed. Finally, I have become a student over this past year of dealing with cancer. So many years wasted; however, better late than never learning anything. I have removed the toxic people from my life. I felt the weight lifted from my shoulders the moment the decision was made; it was easier to breathe.
I have written about this in “The Last Chapter,” and I want to share it again. I still care deeply about those who have hurt me. Yet, I cannot go back to listening to their lies and claims to always walking in the image of God or asking for prayers. Their actions do not show that they need any help financially or otherwise. To the world outside their other toxic associated group, they no doubt genuinely believe they are the ones that need help. When they show their lifestyle, it clearly represents someone who has more than most. It is almost kin to a “scam.”
After more than 50 years, I finally cut the relationship. I could not change what they do or act; they are believed to be correct and do not see their own faults. They manipulate people and situations to their own advantage. My health cannot be subject to unhealthy ways; it is up to me.
Forgiving evil. Within this past year, I have removed the toxic people from my life. It was not an easy thing to do. However, after years of forgiving their toxic ways over and over, it was beginning to affect my health. Then another evil entity came to visit, CANCER.
There are some evils that one cannot forgive; you must first love before you have the need to forgive. There are evils in our nation, our world that I cannot love; therefore, I have no reason to forgive. Some things are just too evil to forgive.
I love those that became toxic in my life dearly, and I have forgiven them. Was I perfect? No, but I was not filled with toxicity as they were. I had room in my soul to forgive and still love, even though they do not feel they have done anything wrong.
I wish the world could be like my fur baby Dixie. She is filled with so much love she believes that she belongs to everyone, and she shows them what love she has to offer. Most return her love. I believe Dixie sometimes keeps me alive, my prayers, and those who send me their prayers, thoughts, love and having a wonderful family.
During our lifetimes, we can give and take love; it will go on if you continue to fill all your empty places with passion, mindfulness, and kindness. EAJM
The old woman sat in a chair in the gathering room of the elderly housing project where her children had placed her. She has lived alone for the past 40 years. Now her freedom has been ripped away. All she owns sits in the small storage area of the local buy and sell the shop. Her gnarled and deformed hands ache. She has nothing more to do but contemplate the mystery that was once her life. No one really knows her, not even her children. She looked upon the flesh of her being. Time had taken its toll. She shuts her eyes slowly as her body relaxes from the pain that will no longer be. It is time to go.
The hours before dawn, and a cold rain pounds into my heart. The grief is fierce as it raises and consumes my spirit, assaulting my senses. Memories emerge from the darkness, becoming one with my soul. In the depths of my wounded courage, I am listing in a sea of sorrow, my life filled with more grief than many can bear. It is the hard cold hour before departing this misery. I search for a miracle. Hope merges with despair. It is my destiny to leave all I have ever loved.
I am uncertain and afraid. Hope has expired. Sometimes waves of anger and fear hang above me, a cloud circulating over the earth. I do not speak of death. Yet, the elderly where I reside; talk until they see their own grave over the horizon.
Much is written about grief, soft words meant to calm the grieving heart. There will be those that say how lovely these words are, and I doubt if they are all true. Grief is not calm and comforting; the comments do not stop the pain. Words penetrate the brain; shatter the heart.
Most are choked with emotions under the flesh where the heart is sheltered by outward affliction; they close their eyes, hoping to have the scene before they disappear. Grief has no place to hide! The speaker believes the words that enter the ears will comfort despair. It will not.
I believe that from the moment of conception I was searching for a Miracle – I am far past the time when I can hope for a miracle. The hours before dawn, and a cold rain outside the tiny slave quarters pounds into my tiny heart. The grief is fierce as it raises and consumes my spirit, assaulting my senses. Memories emerge from the darkness, becoming one with my soul. I left a place of warmth and goodness to be channeled into a world of heartache and disappointment. In the depths of my wounded courage; I am listing in a sea of sorrow my life filled with more grief than many can bear. It is the hard cold hour before departing this misery. I search for a miracle, hope merges with despair, is my destiny to leave stop the beating of my heart and return home. I chose this path to learn of such things to take back to my creator, to show and feel human despair
The Last Chapter 