Wholly Wednesday - A Fighting Spirit

When my mom died eight months ago, one of my cousins texted me with a compliment about her. "She was such a force. She will be so missed," she wrote. My cousin is so right. My mom was a soft-spoken woman with an Italian-flared fighting spirit and a voice of her own.

Just days after, a picture of my mom resurrected from an album. I hadn't seen it for many years, and when I did, I remembered it had been one of my favorites of her. I noticed how content she looks at her kitchen table. Peaceful and reserved with a pinch of moxie talking through her colored trimmed shirt. Growing up, I loved it when she wore this blouse because it had a message of classy fun. In the photo, my mom is seated with ease and a slight tilt of her head, looking into the eyes of whoever took the picture silently saying, "Here I am, fully as I am. No masks to help beg for attention or to try to be anything that I am not. What you see is the real me." Through the image, I sense something grand yet subtle in the essence of the captured moment that reminded me of a picture I had stored on my computer.

I met Christen, a photographer, at a writing retreat three years ago. Soon after I checked in, we introduced ourselves to each other while waiting for the elevator. Our short ride of a few floors quickly led to a connection with meaningful conversation rather than small talk. After learning how our life experiences had crisscrossed in different areas of the country and a few days of life-giving experiences from the retreat, we found ourselves walking around Holland, Michigan, taking photographs then sharing a meal at a great local restaurant. At one point, she randomly pulled out her camera and took a few quick snapshots of me. I didn't know what she saw at the moment from across the table. We sat no less than a foot apart at a hightop, buttery pizza rolls drenched with pepperoni and sauce placed between us. I let things happen naturally, without question, as we paused between inhaling gooey bites of dough. I didn't resist since I've learned not to interfere with a photographer and his or her camera. They see with their heart into the living spirit of life.

When my mom's photo emerged, I searched for the pictures Christen took of me and put one side by side with my mom's. Ironically, we are about the same age in our photos. I saw a reflection that no posed or planned photos could portray; that thirty clicks of a camera could never secure—a natural state of contentment. Wholly sitting and being with the presence of life - the great, the rough, and the gloomy - without resistance. The image of my mom reminds me of who she entirely was as a human being throughout her life, not as the person inflicted with Alzheimer's. The picture of me, well, I was on a writer's high after that retreat, and perhaps that is what Christen saw. But ultimately, it is a reminder of the last five years of life with my mom, the hardest chapter to live, but the one when I learned the most important lesson from her - to stand up for yourself despite what others think or say. Plain and simple, my mom was a generous-spirited force who stood up for what she wanted and believed in, no matter what anyone else thought. It was at an unexpected time I learned this from her.

Two years ago, right before Alzheimer's stole her voice for good, there was a Sunday evening in late April when my brother and I sat with her at her kitchen table. She was seated at the head of the table, the place where she lovingly and joyfully fed so many family and friends. Feeling suffocated by the opportunity to move into an assisted living community, where she never wanted to move to despite the encouragement from others, my mom stood up from her chair. She placed her hands firmly on the table, planted her feet comfortably, and deeply into the wood of her kitchen floor. Confidently, she looked directly into the eyes of her audience, my brother sitting on one side of the table and I on the other and said:

I'm sure you have bad days like I have bad days. When I have a bad day, listen to me.

I'm sure you have days when you complain like I have days when I complain. When I complain, listen to me.

I'm sure you have days when you feel sad, like I have days when I feel sad. When I feel sad and cry, listen to me.

I'm sure you have days when you feel down like I have days when I feel down. When I feel down, listen to me.

My mom was 87 years old when she said this—a time when my family was working through her visible decline. She said these words because some people thought she'd be happier if she moved. The reality is, she lived as positively as she could the 22 years after my dad died. She experienced many beautiful things after he was gone. But she also had a vein of sadness that throbbed through her heart. When it leaked, she wasn't afraid to talk about it, but it didn't mean she wanted to be someplace else to fill the void. Nothing ever fills the void of certain losses. Moving to where some of her friends lived would not replace my dad, the love of her life. She had her unique style, with and without him, of how she lived her daily life and fought for it until the end.

Not everyone wants to live in a community, even if they have friends there. What one person wants isn't what everyone wants. I knew my mom's deepest desire was to remain at home, even if having full-time caregivers was challenging. My mom was better at being the giver than the receiver. With her caregivers, it was easier for my mom to offer them her hospitality than receive their help.

But the moment of that late April Sunday night when my mom spoke up for herself for the last time, not caring what anyone else thought, is permanently etched in my memory. I was never so proud of her, and only after she died did I realize she taught me the greatest lesson of my life that night. If an intention dwells from pure love, for yourself or someone else, don't back down even if others doubt you, don't agree with you, or don't understand you and challenge you. My mom's intention to remain in her home was born from Divine love and hope and my work to help her fulfill that through her widowhood, and Alzheimer's was too.

Again and again, I think about how Alzheimer's is a problematic rascal. It is a strange force that makes things complicated. Everyone and every family and everyone within a family are different in how they deal with and make decisions about life situations and lifestyle choices. Some people need to own a house while others find pleasure in the freedom to rent. Some people like mansions, while others prefer bungalows. Some people enjoy the experience of social clubs when others find joy in solitude. Some people thrive on the pulse of living in a community, and others suffer from debilitating palpitations if forced to go. Even if someone has friends who live in a retirement community, it doesn't mean she wants to live with her friends in that community day in and day out. They can continue to love each other from a distance. Isn't that what we are all learning to do now?

When I think of my mom, I am reminded of Dorothy in the Wizard of Oz, tapping her ruby slippers together, affirming her motto, there's no place like home. Home can have a thousand definitions depending on who you ask, but for my mom, it was her private sanctuary. Alzheimer's may have rented space in my mom's mind, but she didn't let it push her around to an undesirable place she didn't want to go. She triumphed to live out her days in the gemstone of her home, helped by women who found joy in helping her stay there. I thank God for this and them every day still.

By standing up for herself, she also empowered me—what a spectacular last chapter of life with her for me to savor and behold with love and hope.

Through all of life's circumstances - the great, the rough, and the gloomy- I wish you love and hope always.

Until,

Marie