Eulogy: Lyria's Last Days
Lyria's brother, Barton, gave the following address on the occassion of Lyria's memorial celebration, 6/16/2012, in Swampscott, Mass.
Fighter. Lyria was often praised for being a “fighter” by those around her. She mostly accepted and liked this label and she also called herself a fighter. She liked clichés. But sometimes she would ask me if it was really true.
Lyria faced a lot of hard challenges in her life, and had to contend with many hospitalizations, surgeries and long periods of rehabilitation, especially in the past seven years. This was such an intense period that it tends to eclipse the four decades that came before. She wondered aloud sometimes if she had been as brave and motivated as she was expected to be. She wanted a lot of approval from me, her big brother, 4 years younger than her. I was often stingy in giving approval. I had a tough-love relationship with Lyria. There had been times in rehab when it took a lot hard words to get her out of bed or out of her wheel chair to do any walking at all.
Lyria had many hard times and she had the opportunity to die many times. There were many times when she could have quit. But she was never persuaded that dying was better than living. The day before she died she told several of us that she wasn't ready to give up yet. Why would that be?
During her last hospitalization and about two weeks before Lyria died, several family members had a consultation with a hospice service and I’m glad we did. We were advised that 1) anybody who is dying knows it, they just know it; 2) that Lyria would almost certainly choose to stop her dialysis treatments if her family would support such a decision and 3) someone from the family - probably me - should have a conversation with Lyria about this as soon as possible and about starting hospice care. That evening Tarso and I went to see her together to tell her that we knew she was dying and that it was okay to stop struggling, to stop being a fighter.
In her hospital room at MGH: Lyria’s blood pressure was very low and it would soon become clear she wasn’t able to engage in a conversation like this. She also did not respond as we expected: Tarso and I confused her. She thought we were telling her she was dying that very moment and she started asking her nurse if she were dying right then and there. She was alarmed and started to imagine she was getting very dizzy. So, it appeared, everyone except my sister knows when they are dying.
Still on task, Tarso and I both told her that it was okay to stop fighting and struggling. She was not in a suitable condition for this important talk. She was actually hearing the opposite of what we were saying. I could tell that she thought we were telling her to be a fighter and triumph once again. She was hearing what she expected from us - fight! struggle! try harder! That’s what we told her all the time for years and years. I myself found it very difficult to now be telling her the opposite. And it was very discouraging not to be getting through to her.
We backed off that night and tried again over the next two days. This very important conversation wasn’t working. Her doctor, David Steel, tried to discuss the same topic with her but the message seemed to be washing over her. She was too tired to hear. So in consultation with Dr. Steel and Tarso we started making decisions on her behalf. Lyria was going to be sent home for palliative care, ready to transition to hospice as soon as she was ready. We would not remove dialysis as long as Lyria was not in pain. But there could be tough decisions ahead.
It was late in the morning and after several hours I was now alone with Lyria. She was tired. Transportation would arrive soon to take her in a stretcher back to her home in Danvers, to take her to her certain end. It was very hard. We hadn’t had the talk with Lyria that we needed to have. Discouraging. I wanted to engage her.
She loved classic rock and in the past would often watch youtube videos of great bands when she really needed the distraction, when she was in the hospital or in rehab. So as we waited, I tried to interest her in several music videos of Heart and Led Zeppelin but she was fairly unresponsive. The last one I tried was “Stairway to Heaven.” The ambulance guys arrived in the middle of that song and she was tapping her foot while they moved her from her bed to the stretcher so I knew she was listening to it. These transport guys could see she was into the music - so were they - and they started doing everything slower so they wouldn’t need to get going until the song was done. I knew this was going to be her soundtrack.
Several years ago, I recorded her singing along with that song. It was her tribute to her mom’s mom, when she had passed away. She wanted it played at her grandmother’s memorial service. I lost my copy of that recording some time ago and only found it again among Lyria’s belongings a few hours after she died.
So as I waited for her to be taken away at MGH, listening with her to the song, I felt like that was going to be the final goodbye in a way, the most I’d be able to share again with Lyria. She seemed to be declining so fast. It is corny, but at that moment, it became my soundtrack for saying goodbye to Lyria. They took Lyria and I left. I did a lot of my crying that day.
But just as a beautiful song can have an ending you don’t see coming, I didn’t expect the final beautiful coda of Lyria’s life. Although still tired, once she was back home, she regained her faculties enough have that conversation we had been attempting, and to come to terms with the fact that she was dying. For the next week and a half she was uncharacteristically calm. She was able to say goodbye to many people. The staff at her house deserve so much credit for this - we are all so grateful - it is not what we expected. Lyria thanked many and said goodbye because she believed us when we told her she would die soon. But she didn’t choose to do anything to make it happen faster. She didn’t ask to stop dialysis. She wasn’t ready yet. Why?
Under different circumstances it might have been different. First, the palliative care Lyria was receiving at home was doing a good job keeping her comfortable. In the past and in periods of intense pain or fear she had required a lot of persuasion and support to be a fighter and needed a lot of distraction to persevere. Also, Lyria still had a powerful fantasy life, particularly strong when she was younger, full of rock music and movie stars and soap stars and imaginary boyfriends, money won on game shows or the lottery, stardom at karaoke night. This was still worth living for. Was she thinking about next song she would sing next time at karaoke? Getting some stage time was, for Lyria, worth risking her health, really. What else? Why not quite ready yet? Because in reality she was very loved, actively loved, fiercely loved, tough loved and she was enjoying that love and wanted more of it.