separation…

Hi, friends. I’m still around and have enjoyed continuing to follow your posts (for those of you who blog) while I have been gone, although I have realized that there are a few bloggers who I follow via WordPress feed (and not email), because this is the first I have signed into WordPress in a couple months.

Thank you for being patient with me while I wasn’t ready to talk about my mom’s death. I’m still not ready to talk about it, but there has been a fair amount of health news since I last posted, and I don’t want to discuss that until we discuss what came before it. So here we are.

My mom had been sick for a while. She was diagnosed with progressive supranuclear palsy (PSP) in 2015, but she started showing symptoms as far back as 2011. True to its name, PSP is characterized by a progression of symptoms, although often a slow one. PSP is a rare brain disease caused by a buildup of a protein called tau in the brain. My mom’s primary symptoms were falls, speech problems, loss of balance, difficulty swallowing, blurry vision, inability to control eye movements (my mom couldn’t look up or down), muscle rigidity, and changes in behavior.

My mom died on a warm Monday in November. We knew the end was approaching – I had made the short flight to see her every 2-3 weeks in the previous months. I was scheduled to travel to see her the Friday before she died, but she had stopped eating earlier in the week, so I moved up my flight to Wednesday. I knew I was going home to watch her die.

As soon as my flight landed, my sister drove me straight to my mom’s living center. When we arrived, mom was laying on her bed, eyes wide open, mouth agape, staring at the ceiling. I kissed her sunken cheek and held her fragile hand, and climbed in next to her in the tiny twin bed and wrapped my arms around her, but she didn’t respond. We thought she was in an open-eyed coma. It wasn’t until several days later, when she would quietly whisper “thank you” to the nurse who brought her a blanket, that we realized she wasn’t in a coma, she just couldn’t talk, move, or blink because of the disease. In the 5 days I sat next to her bed while she was dying, those two words were the only movement she made.

That is the hardest part about PSP: you become a prisoner in your own body.

I spent a few of the nights on the couch in her assisted living center apartment. It wasn’t good sleep, but those were my favorite nights. I stayed up late talking to her, telling her how much I love her, and reading to her. The nurses would come in with a look of compassion, we’d chat for a few minutes about their kids or the upcoming Thanksgiving holiday, and I would ask that they give her more morphine. I was always asking that she get more morphine. If they had been allowed to leave the bottle with me, she would have died a lot sooner.

By Monday, five days after I arrived, Her vitals had declined. I felt anxious and tachycardic all day, and finally took an atenolol. That is the only day in the past five months that I have needed a beta blocker. I think I just knew.

Dinner time rolled around, and my sister and I decided we would go back to her house for a home cooked meal. We were ready for something other than plastic cartons filled with salad. I was going to take an Uber back after dinner so I could again have a slumber party with my mom. I kissed my mom’s cheek and told her so as we left for dinner.

After a delicious dinner of grilled salmon and roasted vegetables, as we were washing the dishes, my sister’s phone rang. There was an awkward silence as we made eye contact. I asked if it was the living center calling, and my sister said she didn’t recognize the number on the screen. She answered her cell phone. All I could hear was the occasional “okay”, from my sister. The man my sister was dating had joined us for dinner, and he and I sat silently while my sister was on phone. It felt like that phone conversation took hours, waiting for some hint as to its purpose, when in reality it was probably only 30 seconds.

As soon as my sister hung up, I asked if it was the living center.
“Yes.”
“Is she dead?” I asked.
“Yes.”

I immediately started sobbing. Even now, three months later, that short conversation with my sister is still very difficult for me to relay. Because it means I found out my mom died from a phone call. Because it means I wasn’t there. And, more importantly, because it means she died alone.

I know that, if we are able to choose the moment we pass, my mom chose that moment because she was alone. She didn’t like to be the center of attention and she never wanted people to make a fuss over her. If she wanted an audience, she could have had one at almost any point in the previous five days, when my sister and I only left her room during the day to take a short walk in the sun or drive a few miles to pick up salad in plastic containers.

Even knowing all that, it’s still haunting for me to think of her lying alone in bed, taking her last breath, with no one around to witness it.

My sister and I drove over to the living center after we received the call to say our goodbyes and make sure they had placed ice around her head. My mom wanted to donate her brain for PSP research, and we had to place gallon-sized ziploc bags of ice around her head to preserve the brain for donation.

In the days that followed her death, we cleaned out her apartment at the assisted living center, met with the mortuary team, closed her accounts, and otherwise took care of the business of death. I left to come back home that Saturday, ten days after I arrived.

Last month we held a beautiful celebration of life for my mom at a botanical garden. I enjoyed seeing many of her friends I had not seen in years and hearing stories about her life as a college student, a young mother, and a seasoned professional. I wanted to close my eyes and live in the warm embraces of her friends forever, and allow it to fill the holes with the maternal love that is now absent from my life.

I gave her eulogy, or the celebration of life equivalent, standing in front of a crowd, fighting back waves of nausea and dizziness and emotion as I attempted to summarize the type of life you read about in best-selling memoirs or motivational speeches. My words were distant, perfunctory, as I had struggled for weeks to write a eulogy that combined the appropriate amount of humor, nostalgia, and sentiment, and ended up settling on words aimed to please the group of people gathered that day, instead of the ones I whispered to the box of ashes back at my sister’s house the night before. Shakespeare once wrote, “the breaking of so great a thing should make a greater crack,” and I didn’t know the words to describe the giant crack in the world that no one else seemed to hear.

I thought all of this would be easier. That seems naive now, especially when she was my “person” – that singular soul who you can tell anything to and never worry whether you will be accepted. But she had been sick for so long, and the anticipatory grieving process begun before her disease even had a name. I missed her even when she was alive, and didn’t expect that would be drastically different when she died.

But it is. Every day is spent painfully aware of this pervasive void, and my whole life is darkened by its shadow. In a poem called “Separation”, W.S. Merwin wrote:

Your absence has gone through me
Like thread through a needle.
Everything I do is stitched with its color.

That’s exactly how it feels. You don’t realize you were desperately clinging to the tiny flicker of hope until it is smothered.

My therapist reminds me that grief isn’t linear, that some days we take a few steps forward, and others a mile backwards. I don’t know that I have ever fully grieved anything in my life, really felt it sinks its teeth into me, instead of trying to placate it with busywork and other people. Just sitting with my grief is new and exhausting. It makes me vulnerable and uncertain and, however slowly, I’m learning to live with the vulnerability and uncertainty, but haven’t yet learned how to live without my mom.

I hope you will help me discover how.

Smell ya later.
– Linds