The Brown Binder

My mom died two weeks ago. Since she’s been gone, I feel like I fell down a rabbit hole and there’s no way to climb out.

I can look up and see the light of day far above me, but where I am the light is dim. There are several tunnels going off in different directions. When I look down them, all I see is dark. There are no signs above the doors to tell me where each one goes. That would be nice, wouldn’t it?

“This way out.”

“This way to a bottomless abyss.”

“This way to adventure.”

“This way to nowhere.”

I don’t know which way to go or what to do.

Eleven years ago when mom moved in with me, we were both independent women. We traveled alone and together. We came and went as we pleased. We created a new little family unit. It worked.

Her freedom began eroding over time. She developed partial blindness. She couldn’t see to drive or read her books. She couldn’t see to cook or sweep the floors.

She could make her bed. Take care of herself. Fold laundry.

We worked it out.

She spent a week here and there with grandchildren. Week ends with her other children. A trip to Arizona every summer to visit her sister, Mollie.

This spring, she got sick. I took her to the emergency room. They diagnosed her with pneumonia and put her in the hospital for two days. Because of Covid, this was the first time we, her children, couldn’t rally around her.

The next month, she got sick again. I took her to the ER again. Another chest x-ray. The hazy cloud in her lung was in the same place it was last month. More tests. The ER doc said it was probably a tumor and referred her to a lung specialist.

After a biopsy and several scans, she was diagnosed with a tumor in her right lung. Cancer. Because she was a dialysis patient, she wasn’t able to take chemo. She did a series of radiation treatments.

She got sick again. I took her to the ER again. They ran tests. The ER doc said it wasn’t pneumonia or bronchitis. He said they could admit her to the hospital and give her breathing treatments, but really there was nothing else they could do for her.

She responded, “Damned expensive hotel, don’t you think? I want to go home.”

She was put on home oxygen and lived with a canula up her nose for the rest of her life.  

Her primary doctor said she probably had six months to a year to live. The radiologist told her that 50% of the people who get the radiology treatment she was getting die within six months. The other 50% are alive three years after treatment.

She said, “Let’s do it.”

She flunked out of Hospice. Twice. She didn’t want to stop dialysis. Or course not, were they crazy?

She was referred to Home Health. Once a week for six weeks, she saw a physical therapist. She did her exercises and got strong enough to use her walker instead of the wheelchair. A nurse came in and documented her steady weight loss. An occupational therapist taught her how to breathe slowly, inhale smelling a flower, exhale blowing out a candle. This, and some medication they prescribed, were designed to help her manage air hunger.

Air hunger is an ugly, scary thing.

She got better. Then worse. Then better.

In one of her better times, we spent a week in July on the Oregon coast. She loved the coast. We sat on the beach and watched the waves. We had a campfire on the beach and cooked our dinner over the coals. We invited two very cute guys with a toddler to join us roasting marshmallows. They were all darling. It was a good vacation.

Many of her grandchildren and great-grandchildren came to say good-bye. She loved seeing them.

She and I spoke about her death.

She said, “I’m old.”

“I don’t feel good.”

“I miss my one true love.”

“I want to dance again.”

Toward the end of August, she decided she’d start doing her exercises because she wanted to walk with her walker on the beach in October. She was a fighter. She never gave up. She never quit making plans for the future.

Then, she hit a tipping point. She was standing up from her chair when she felt a terrible pain in her ribs. We got her to bed.

That was the night she started the hard work of dying. She still got up to use the bathroom. Then she was too sick to go to dialysis. Missing dialysis is very bad.

For months, members of our tribe came to spend nights with her so I could get some sleep.

In these end times, we flowed in and out of the house all hours of the day and night caring for her. We gave her sips of cold water. A blanket. We talked to her when she opened her eyes. We talked to her while she slept.

She slipped away on Monday afternoon.

I believe there’s a life after this one. I believe her true love, her parents and other family, friends, and grandchildren were there with a giant “welcome to heaven” party. I think she and her true love danced all night.

Today, I’m sitting here in our empty house thinking that I should get up and do something. There’s lots to do. I’ve been puttering since she left. I put all her stuff in her bedroom and locked the door. I’m not ready to erase her from our home. I’ll deal with it all in the spring, maybe. I miss her so much.

This rambling story finally brings me to the Brown Binder.

I’ve been cleaning up my room and I stumbled on it again. I bought the Brown Binder at a thrift store. It’s a 3-inch binder and it was full of blank paper. I decided I wanted to put something on every page. I’ve also stuffed it full of old calendar pages. I found pages dated 2014, 15, 17, 18, and 19. I have no idea where I put 2016. It may turn up one of these days. Or not.

I’ve been wanting to write on my blog. I didn’t have the time or energy to think about it. But now I do.

I’m going to start with stuff from my Brown Binder. It’s things I’ve written, quotes from interviews I’ve heard, notes from books I’ve read, and thoughts I scribbled on my calendar pages.

It’s a place to start. I guess I’m choosing to move. Choosing a tunnel. I have no idea where it will lead me.

I invite you to join me if you wish.

Thanks for listening.