When I was first diagnosed with breast cancer, my initial reaction was to feel shame and to hide it immediately. I didn’t want anyone to know I had the dreaded word “cancer.” I certainly didn’t want to tell the kids. When I went to the breast cancer center in my hospital for the very first time with it’s big “Breast Cancer Center” sign over the doorway, I literally looked over my shoulders to be sure there was no one around who would see me walking in that door. In my childhood home, we were brought up to never discuss illness openly, especially not a debilitating one like cancer.
My mother had multiple sclerosis for most of her life, but she never told anyone until I was thirty-one years old. Mind you, she was diagnosed when I was about five years old, so she lived alone with this knowledge for over twenty-five years, never sharing it with anyone, including her own husband and her parents. Her experience with multiple sclerosis was one of shame and secrecy, never sharing it with anyone and never asking anyone for help. When she finally revealed it to me, during my thirty-first birthday dinner, I asked her “Why did you hide it for all these years?” and she said, matter of factly, “Well, your father would have put me in a wheelchair and I knew that would only make it worse, so I just kept it to myself and powered through.”
That was just like her. And she was right, my father was a caregiver who would have gotten her a wheelchair to enable her to participate more actively in life. But my mothers mind was made up and she was convinced that she didn’t want to “give in” to the illness so she didn’t tell him or any of us for over twenty-five years.
My mother would never acknowledge weakness when we were young, and appeared stoic and driven for most of my childhood. Because of the silence and anger that came of her secret, I thought she was unhappy and didn’t want marriage, kids or any of the trappings that came with such a life. It wasn’t until she died at the age of eighty-two when I read her journals that I realized how much she wanted this life, but struggled with her fears about what the disease of multiple sclerosis was going to do to her body over time.
Once, after she told me she had multiple sclerosis, I asked her what the doctor had told her about how to care for herself with this disease. At that time, in the early 1960’s, there was very little knowledge about how to treat multiple sclerosis and her doctor’s primary advice was, “You must never gain weight, as at some point in your life you will be bedridden and your husband will have to lift you in and out of bed.” This was the best he could offer; never gain weight as you will eventually be unable to do anything for yourself. What a frightening picture to paint for a thirty-five year old woman with four young children.
Recently I was cleaning out my room when I found a basket in a corner filled with old papers, and discovered some old diaries and pictures of my mothers hidden among the papers. I sat down to read them and ached with sadness at what her life must have been like.
The diary entries I found were of the days surrounding her father’s funeral. My mother loved her father very much and she was his favorite. When he got older in his late 70’s he had to be put into a nursing home because he couldn’t function on his own any longer and my grandmother couldn’t care for him at home. I remember visiting him and feeling a sinking sensation in the pit of my stomach, seeing him helpless in that bed with nothing to do and no one to really care for him, only seeing a friendly face of love when we’d visit him on nights and the weekends. I was ten years old and it was my first experience seeing someone age like that, and I was struck with the depth of despair that he was experiencing.
The first entry in her diary was from the day that my grandfather died and I was struck by how spare and stark my mother’s words were:
“Today Daddy died….When I went in Grandpa was lying as usual, a nurse came in and told me he had been dead about 15 minutes. His mouth hung open. I tried to close it and discovered several teeth missing on the top gum. Cried for a little.”
I never knew that was how she found him, that several of his front teeth were missing. This was during the era of the New Jersey nursing home scandals in the 1960’s and my parents were always worried about how my grandfather was being treated. One time we went in and they found him tied to the bed. When my mother asked the nursing staff why, they said he kept trying to get out of bed, so they tied him to the sides of the bed so that he couldn’t get out and fall.
The next day’s entry:
“Poor Daddy! He looked so small……..The past few months have been heartbreaking seeing him gradually atrophy. He never complained – just once at the beginning he told me he couldn’t stand it another week. What bothers me most is he died without any of us being around.”
I hated going to the nursing home. My mother would start to get ready early in the day, as on the way, we would pick up my grandmother at her apartment in Elizabeth and she was invariably late. My mother would tell Grandma exactly what time we would be there, but Grandma McClafferty was always late as her clothes had to be just perfect, including a hat and white gloves. She was very focused on what people thought of her and she wasn’t going to rush getting ready to go to the nursing home. Even there, she had to be properly attired.
I remember going into my grandfather’s room at the nursing home and standing in silence behind my mother, watching as she ministered to him in his bed; thinking how awful it was to grow old. My grandfather, who had also always been impeccably dressed, in a suit and tie with a fedora hat on even when he was just taking my sisters and I on a walk around the block, was now stuck in a bed in his pajamas, just lying there in obvious pain with no joy or life in his eyes, waiting to die.
It was terrifying and horrifying and I was afraid of it all. Afraid of the smells of the nursing home hallways, afraid of the other patients, of the uninterested nurses aids, afraid of poor Grandpa in his bed, looking so forlorn. But especially afraid for my mother who was worried and full of despair over how her father was failing.
My mother loved her father very much and was horrified to see him in a nursing home, but my grandmother couldn’t care for him anymore and both of my parents worked, so we couldn’t take care of him in our home. It was a terrible time in our family. We could all see how devastated my mother was and there didn’t seem to be anything we could do to do help her. It exacerbated my mother’s already tumultuous relationship with her own mother and there was a sense that there was nothing we could do to help her get through this. My mother was a very stoic woman and wouldn’t share her feelings verbally, but I could see how desperate she was every time she talked about him, every time we got a phone call about him and every time we would go to visit him.
The rest of her journal entries are filled with short, brusque sentences about her days over the next few weeks and I’m suddenly aware of how busy she was, how much she carried the burden of the funeral preparations, our household, raising the four of us, teaching full time at a local high school, cooking, cleaning, doing laundry and caring for my grandmother. So many of her entries end with the words, “So tired. Fell into bed.”
On top of all that, she had her hidden diagnosis of multiple sclerosis and no one to share it with. If you know anything about multiple sclerosis, you’ll be aware that it’s a debilitating illness that causes extreme exhaustion, in addition to several other side effects, like difficulty walking. My mother never told any of us what she was going through during this entire time with my grandfather, and there’s not even a single entry in her diaries about the illness. She was so committed to keeping it a secret that she never even wrote about it in her journals.
So this was my role model when I was diagnosed. When I received my diagnosis of breast cancer, I immediately went into lockdown mode, as only we Schmidt’s could do, hiding it from everyone except my two closest friends and my husband. He was the one who surprised me by saying that we should tell people and especially the kids. He said it in such a matter of fact way, as if there were not even a question about it. I looked at him with curiosity as it was so unusual in my family to discuss illness openly like that and yet, it seemed obvious and logical once I thought it through. I began to see that of course, we should share my cancer with family and friends, and once we did, I realized how much support and help I gained from all of them by sharing it. Expressing my vulnerability allowed me to find inner strength that I never knew I had.
Each of us experiences life situations like this differently, based on our experiences from our past and our childhood. I’m lucky that my husband was so open about it, he never thought we should hide it for a moment and it opened my eyes to a new way to experience illness. If we hadn’t told my kids, who knows what they would have learned from the experience? They might have grown up with the notion that illness is shameful and to be ignored, not to be addressed and taken care of.
My mother was a strong woman who lived life in her own fashion. In her era, people hid illness. In today’s world, illness and vulnerability are accepted and embraced. I wish that my mother had been able to be open about her illness when she was younger, I think she would have had a richer, less stressful and happier life.
I would encourage anyone going through breast cancer to be open about it with their family and friends. You may be surprised at how much love and support you’ll receive. And by opening yourself to the help of others, you offer them the opportunity to express their own humanity. Please don’t suffer in silence, embrace what you’re facing and accept support from others with grace and gratitude. I often wonder what her life would have been like if my mother had done this earlier in her life.