Visiting Lisa

Monday, 24 November 2008

Picked up Divina this afternoon, and we went to visit Lisa. Living in the house she grew up in, down the street from where she went to high school, the young school teacher is now bedridden and incapacitated. But her mind is fully functioning, which is the hardest thing about ALS or Lou Gherig's Disease. It was a sad visit with Lisa. My dad always had a soft spot in his heart for dear Lisa. She always had a connection with him, as she looked up to him for advice when she was first diagnosed with the disease.

http://lisa.oceanit.com/mambo454/index.php?option=com_frontpage&Itemid=1

Diagnosed with ALS in her late 30's, Lisa got hit hard and has been progressing fast. Unfortunately, she got the bulbar ALS, which affects the speech/respiratory first. She must be only 40, if that, and this horrible disease has taken her body almost completely. Her face is droopy, like Peggy's was. She has a feeding tube and a trach, totally dependent on the ventilator 24/7 to breathe. Her stomach is bloated like my dad's was (she joked that she is expecting). She can only move her eyes. It was frustrating for her to move her head to use the signal to beep. Her mom spells everything for her on a pad of paper, and goes "First half...A, B, C..." until she gets to Lisa's desired letter. She knows it's the letter when Lisa looks up with her eyes for "yes". If she looks to the side with her eyes, it means "no". It took about 5 minutes for her to spell out "He is adorable," referring to Chase, whom she met for the first time today. I apologized for having not visited her the past couple of years. It's been a busy time with baby.

Lisa still has her sense of humor though, even though the muscles in her face has atrophied so she can no longer form a smile. Her mom told us that she's smiling inside her heart.

I feel really sad for her. Her dad talked to me. He asked me how long my dad lived with ALS, how we knew he was dying, and the events that led up to his death. I told him about the oxygen, the respiratory failure, the morphine we administered, how we were all by his bedside when he passed. Lisa's dad expressed how he wishes it was him. Why does he have to see his young daughter go through this? It should be him, he said. He's ready to go. "Take me," he said. It must be so hard for her parents, to know that they will outlive their daughter.

Though Divina was at her bedside most of the time, I was chasing around my little guy, making sure he wasn't destroying the house. He took their white board pens and tried to throw them away in the garbage can, threw the coasters behind the couch, ran up and down the hallway, etc. When I wasn't chasing Chase, we were sharing with Lisa and her mother Jane about Peggy's condition before she passed. She also asked about Divina's husband Britt, who's been slowly progressing with ALS for almost a few decades now. I could tell by the questions that Lisa was asking, that she's trying to figure out what to expect for herself, when she will be able to tell it's her time.

Lisa shed a lot of tears. I think she knows her time is coming up. She's finding it harder to communicate. She doesn't want to be a burden to her family. She actually wrote a letter to her parents this past June and asked them to take her off the ventilator, but they convinced her not to. Now, she's holding on, hoping to see her niece graduate from high school next June. Her mom told me that an ex-boyfriend of hers (whom she dated for 14 years), recently found out she's sick and has been visiting her. You can tell from the photographs and letters around the room that she has a lot of friends who have been there to support her along the way. But, if she can no longer communicate, she would like to go.

She has made her own "bucket list" of things she would like to do. One she did a couple of weeks ago, when her family took her to see Cirque du Soleil. Next, she wants to drive around the island. She also wants to go in the ocean.

Before we left, her mom told us that she wanted to thank us for coming, that she wanted us to hold hands with Lisa, as we listened to Na Leo Pilimehana's song "Friends". As the local group sang the words "Friends are friends forever..." Lisa cried. In fact, it was hard for all of us to hold back the tears. I wiped the tears away from Lisa's cheeks, gave her a hug, and kiss. I know my dad would want to send a hug to her too.