Journal entries are not memoir. At least, not usually. Rachele Baker, however, took her mother’s end-of-life journal and turned it word-for-word into a book, with just a few notes of explanation here and there and some letters her mother wrote or received. And it turned out to be a kind of memoir! While the book started out slow, with some meandering writing that could (perhaps should?) have been edited out, it turned into an intense ride that I didn’t want to jump from. I grew to care about this strong woman determined not to be a burden.
I asked Rachele some questions about how Eighteen Months To Live came to be. Her mother, Midge, was diagnosed with malignant pleural mesothelioma (cancer of the lung lining) from asbestos exposure, presumably from washing her former husband’s work clothes. He worked for an insulation manufacturing company, moving bags of asbestos. He was fine at the time of the journal’s publication, but Midge was a smoker and came down with the cancer. She was given one to eighteen months to live following diagnosis in 1990. At that time, there wasn’t much hope for survival from this cancer.
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Rachele, normally journals aren’t published because they are a mishmash of personal musings with no real direction. Even historical diaries or journals can be boring and tedious to read. Your mother, however, wrote a journal with a purpose. Please explain this and why you decided to publish the journal.
The first time I read my mother’s journal shortly after her death, I remember reading that she wrote her journal so that her experiences could help others. I remember thinking at the time that I thought it was a strange thing for my mother to say because her children were going to be the only ones that would ever read her journal.
A number of months ago, I was cleaning and organizing my garage and I decided to look in a large box of memorabilia that I kept stored there. In the box I found my mother’s journal. It was rather prominent in the box because she kept it in a bright orange binder. It had been about twenty years since my mother’s death and since I first read her journal. I decided to read my mother’s journal for the second time and this time it became clear to me that my mother wanted her journal published so that it could help others.
She wrote in the first page of her journal:
“I want to present a historical commentary here, not just for myself but for doctors and others who might profit from my observations and reportings. The gist will be recording physical and emotional feelings, actions, and reactions.”
She made similar comments throughout her journal such as this comment in the chapter entitled “Living With Dying:”
“I find it extremely difficult to describe the feeling of the pain and yet this is something which I want desperately to do to help others who may read this. My experience has been that all the written material pertaining to cancer states and re-states that the person experiences excruciating pain and yet, to my knowledge, no one has expanded on this. This is not being morbid. This is wanting to provide information which I wish I had at my fingertips.”
The first time I read my mother’s journal, I was still in a state of shock and extreme grief following her death. The second time that I read my mother’s journal some twenty years later, it became clear to me that this was something valuable that should be shared with others.
Who did you think would be the audience, the readership, for the book? Mesothelioma is a rare disease. Are you surprised by the good reviews from readers who have not had any cancer in their circle of family or friends?
I thought the readership for my book would be people living with cancer or their caregivers. However, I have learned a lot from the feedback provided to me from people who have read my book and written reviews or sent me emails. I have learned that many people find my mother’s experiences inspiring since she was able to find joy in the simple things in life despite living with ever increasing pain and the progression of her disease.
One person that read my book told me that she had lived with chronic pain for many years. After reading my book, we exchanged several emails. In one of those emails she said,
“Her words of the pain really resonated with me, especially when she wrote of looking in the mirror and not recognizing the person there. Chronic pain robs you of so much.
Again I thank you for getting her words out there. I pray that it will get to the care providers who truly need to understand what is happening to those in their care.”
I found this woman’s feedback very enlightening because I had never thought about the fact that my mother experienced “chronic” pain. This woman’s words gave me new insight into my mother’s experience as well as further reason to get my book into the hands of as many people as possible – not just those suffering from cancer or their caregivers.
You wrote an explanatory prologue and an epilogue and broke the journal into sections such as “The Beginning of the End,” “Bitterness,” and “Life Continues.” Was it easy for you to figure out the sections? And I have to ask how you came to name one section “Pain and Problems” when there are plenty of pains and problems throughout the book. Your mother was an incredibly strong woman!
As I transcribed my mother’s handwritten journal, it made my mother’s final months of life very tangible and real and freshly painful to me. I re-lived each day of her life with her through her words.
Since I knew my mother so well, I knew that certain things affected her outlook. I knew, for instance, that the holidays were very important and special to her. I knew that her excitement and anticipation of the holidays kept her focused on more positive things so I felt that the period around the holidays delineated one “phase” of her experience.
It seemed to me that my mother’s final months of life went through phases based on the time of year, her level of pain, and whatever family events she was involved with at the time. Therefore, the division of her journal into chapters seemed natural to me.
The chapter immediately preceding “Pain and Problems” is called “A Time of Savoring Life.” In that chapter, my mother said, “I am really up and feeling good.” During this time, my mother came to visit me in California, decreased the amount of pain medications she was taking, began baking and cooking treats for the holidays, did chores around her house, celebrated Thanksgiving and Christmas, started making plans to attend my brother’s wedding, was taking guitar lessons, redecorated her bedroom, enjoyed daily walks, and generally had a very positive attitude.
In the chapter entitled “Pain and Problems,” my mother wrote about having to increase her pain medications and that she was experiencing increased pain and restrictions on her level of activity. In the beginning of this chapter she wrote:
“I have been having some real knee-jerking, back-slapping pain these past two weeks.”
The chapter division seemed quite natural at this point.
On a personal note, your determined mother kept her problems hidden from her children, and you lived on the opposite coast and couldn’t visit often. I can see from the book’s cover why she wanted to stay in her home as long as possible. How did you feel finding her journal and discovering all she went through living alone in her house in the woods? Your brother would visit to go deer hunting, the grandkids came, and they didn’t seem to notice her troubles. Only your sister had a clue.
As I mentioned previously, the first time I read my mother’s journal, I was in a period of extreme grief. I do not think I fully recognized or understood what my mother went through until I spent months transcribing her handwritten journal after reading her journal for the second time. Then, of course, I experienced feelings and thoughts such as “I wish I would have…” and “I wish I had been there…”
Interestingly, in spite of the fact that my sister was my mother’s caregiver during the last couple of months of my mother’s life, my sister experienced similar thoughts, feelings, and reactions when she re-read my mother’s journal in my book – thoughts like “I wish I had been there…” and “I wish I would have…” When you love someone so intensely, it is natural to wish you could have made their life better somehow.
Did you think about editing the journal, to leave out parts that had nothing to do with the cancer issues, or even, say, the many normal temperature readings?
I do not think this is just a book about cancer or a cancer patient. It is a book about a woman who was trying to live her life as normally as possible in spite of her terminal illness. I think the book would be very sterile and boring if it did not contain the information that my mother included about her walks, her interactions with friends and neighbors, her time with her family, and other daily experiences.
I wanted to let this book be my mother’s story in her own words. While the temperature readings might not seem to be very interesting to some people, the fact that my mother kept taking her temperature gives some insight into her thoughts and feelings at the time. She was obviously worried that she might be sick with something besides the cancer. She wanted to make sure that she did not just attribute all of her ailments to the cancer if there was something else going on. She wanted to make sure that she went to the doctor for treatment if she had something that needed treatment.
Even though she did not verbalize it very often in her journal, my mother was very frightened by her diagnosis with terminal cancer and by all of the “unknowns” in her future. She did not know what to expect in the course of her disease. She tried to get information about malignant pleural mesothelioma but information was not readily available back then. So she had a fear of the unknown, a fear of possibly missing some important clinical sign, a fear of not obtaining necessary treatment when needed, a fear of not knowing how she would die, and a fear of her impending death.
My mother put on a very brave face for the world to see but her journal reveals a very scared and vulnerable side of her that she only allowed us to see in the pages of her journal after her death.
Readers bond with your mother through her intimate thoughts and experiences with the cancer. She went to the hospital and stopped writing, you wrote eloquently about visiting her in your sister’s care, then your mother seemed to pick up some until she wrote you a very normal, everyday sort of letter and died two days later. Since I developed a reader’s friendship with her, I have to ask how she died—hopefully peacefully.
My mother died very peacefully surrounded by people who loved her.
Are your sister and brother okay with your mother’s journal being published? There is nothing in it negative about the family, but still, after publishing my mother’s memoir, I had an odd feeling of possessiveness when thinking about strangers reading all about my mom’s personal life. Your mother was very open in her writings.
I think it is normal to experience a feeling of being exposed and vulnerable by allowing our mother’s most intimate and personal thoughts and experiences to be read by the world. I struggled with whether to include in my book the very personal letter that my mother wrote to me and left in a sealed envelope to be read after her death. But I felt it was an important part of my mother’s story and her legacy of love, so I included it at the end of my book.
My sister expressed it beautifully. After she read my book, she said, “It’s a love story.”
Is there anything else you’d like to say about your writing or publishing experience with Eighteen Months To Live?
I wrote this book to love and honor my mother. Transcribing my mother’s handwritten journal was a very painful experience for me. I experienced actual physical pain during the hours, days, and months I spent transcribing her journal. Sometimes I felt like there was a large, painful compression of my entire chest. Sometimes I felt like I could not breathe. It was only my strong love for my mother and my desire to honor her wishes that enabled me to push through the pain and transcribe her journal so that it could help others.
I would like to share this review written by Sue Owen in the UK and published on my book’s page on Amazon.co.uk:
“Brilliant. Moving. Helpful. As the wife of a mesothelioma sufferer I found this book to be very helpful. It also gave my husband ideas about coping with pain. Very touching.”
The grateful emails that I have received and the reviews written by people that my book has helped and inspired has made it all worth it. I know that my mother would be very happy and pleased to see that her journal is, in fact, helping other people and making a difference in their lives.
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Rachele, thank you for giving more insight into this story. This is not just a study of one woman’s medical experience with cancer, but a story of bravery and determination in the face of fear. Not just a technical journal, but a real story with a heroine I came to care very much about. Midge really opened her heart, and was a good writer. I would recommend this book particularly to families of those with cancer or other serious conditions to help in understanding, empathizing, and advocating for the persons they care for. “Questions for Doctors” is a chapter everyone should read and store in their minds, just in case.
Writing a journal and carefully documenting her journey probably helped Midge get through her difficult days, but she was generous to create the journal as a gift for others living with mesothelioma. She also gave her family a written legacy of love and courage to treasure. Having a cancer-free family, I admit to skimming over some of the documentation, but found the story a poignant tribute to a strong, inspiring woman.
Rachele Baker is a writer and small animal veterinarian living in southern California. Eighteen Months To Live is her first published book and is available on Amazon as an e-book. Rachele is planning a series of short books about medical problems in dogs and cats. Find her on Facebook and Twitter and at rachelebaker.com.