Patt’s favorite word was “Cool.”
When I met her the first — and last — time she was in bed, attached to countless tubes.
She could barely talk – her limited slurred speech was difficult to understand.
She couldn’t get up, couldn’t swallow, and couldn’t breathe on her own.
She couldn’t feed herself other than pick up the glass and she hadn’t had any privacy in the bathroom for a long time.
She taught herself how to write with her left hand … and by the time we met, she could scrawl her thoughts out almost as fast as she could talk.
Patt had amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease” – a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
She was, literally, on her deathbed.
It was difficult for me to go in as a reporter writing a story on hospice care … I was nervous and anxious. Here was a woman, almost my mom’s age, who I knew was dying.
She had invited me to her house and her case manager had encouraged I visit, despite all my misgivings.
What do you ask a dying person? And how do you do it with grace and humility … with empathy, not sympathy? What do you say to her family? How do you console her? How do you say, “It’ll be alright” when you know it won’t? How do you look into a dead person’s eyes and not feel guilty?
I had never had this experience before – the only time I had come close to holding a dying person’s hand was my Daadi when she was in a coma.
This was different.
I was going to interview this woman. Ask her about the life she had … the one she wished she could hold on to.
I was mentally prepared to come out of her house crying, overwhelmed with despair and a deep, deep sadness.
But Patt defied all stereotypes. The images I had in my head of a dying person … and the person I met, were polar opposites.
Wearing a bright pink t-shirt and sporting the most contagious smile, she greeted me with a thumbs up. I explained what I was hoping to write.
She said (scribbled on her notepad) “Ask whatever you want; don’t be shy.”
She went on to tell me that before her terminal diagnosis, she was very active with her granddaughter’s school – was president of the PTA, and took her granddaughter for swim meets at 5:30 a.m.
She also loved dancing and gardening – things she yearned to do, but couldn’t anymore. “But I CAN still enjoy watching dance,” she wrote explaining she was a regular viewer of Dancing with the Stars. A grin followed.
We laughed.
She went on to describe her love for gardening – she had planted flowers on her deck that friends took care of since she became bedridden.
“Even when it really tires her out she never turns anybody away,” said Pam, a nurse who was part of Patt’s hospice care team. “She affects so many lives and there are a lot of people here who would do anything for her. She’s just always been there for everybody else and now it’s their turn to give back.”
Patt kept nodding and then scribbled: “It means a lot to me get that kind of support. I got cards yesterday that my friends’ kids made.”
She smiled, proudly showing me the butterflies, flowers, and smiley faces on the handmade cards.
I didn’t need to comfort her. She knew this was the end of the road and she was fine with it.
She had embraced her illness and she was being strong for those around her.
“What message do you have for all those who will read this article?” I had asked Patt.
“When you have an itch and you can not scratch it, that’s a big deal,” she wrote. “Every time something is lost like my ability to pee on my own, it’s another day. We take a lot of things for granted. Life – enjoy it while you can. You never know…”
“Cool,” I said after a long pause.
“I like you. You say ‘cool’,” she wrote back sensing my discomfort.
“It’s ok,” she wrote next. “This is part of life.”
I came out of the house hopeful.
For Patt, her family, and all her friends.
And for myself.
“Can you imagine what it must be living like that and knowing what’s going to happen next?” asked Pam as we were driving back from Patt’s house. “She knows what’s going to happen – her lungs are just going to stop. And she’ll just be waiting and waiting and waiting. It’s not like some disease where you go into a coma and just slip out. It’s so many things … so many abilities lost every day…”
We kept quiet the rest of the ride.
Both of us trying to figure out how Patt could remain so joyful in the midst of such emotional — and physical — pain.
Here was a woman who was the epitome of strength, resilience, and undefeatable exuberance.
A dying person, full of life.
Much like William Ernest Henley. She was the master of her fate; the captain of her soul.
I met Patt on September 27 and received an e-mail from her nurse on October 2 that said:
Don’t know if you have heard, but Patt took a turn for the worse last Thursday. I’ll let you know when she passes away.
My heart sunk. I was hoping she’d stick around until Christmas – her favorite time of the year.
She fought it out, remained brave, and finally breathed her last on December 4. The nurses told me later, she was in no pain.
Never have I met someone who left such an indelible impression on me in such a short time. I hardly spent an hour with her and barely understood what she said, but the light in her eyes, her smile and her affectionate demeanor said so much.
Patt taught me a lesson that I will always carry in my heart: celebrate life. You only get one chance and you don’t know when it’ll be taken away.
For those of you interested in knowing more about the hospice services Sutter VNA & Hospice offers, here is the article I wrote for ADVANCE for Nurses.
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Very nice post! And a powerful message.
Thanks, Shachi.
Lately I have been trying to live more abundantly in the "NOW" rather than relive the past or stress about the future. It is making a big difference – not only in my stress levels but also in my ability discover the joy that can be found in even the most mundane things. Yesterday I had yesterday, and tomorrow I will have tomorrow, but today, all I have is today. It is up to me whether I make it pleasurable or waste it by worrying about yesterday or tomorrow. It’s a very peaceful discovery that I’ve "heard" a million times but am finally realizing what it really means.
You’re right, Lisa. Even though we hear it all the time and "know" it to be true, we rarely implement the knowledge. It’s inspiring to know you’ve managed to constrain the cosmos to those little moments.
This post illustrates beautifully that Patt lives on — in your heart, and just now, in mine.
Thank you, Katie. I will never forget Patt…she does live on.
[…] I met Patt, I had no idea what it was like for someone relatively young to be “ready” for […]
Wonderful story, thanks for sharing. I wish we all could be so strong & open about dying. Death is only a passage to another life, nothing to be sad about.
Live life to the fullest everyday as Patt said you never know what will happen tomorrow. One of the greatest lessons we can all learn.
hugs,
Bill
Thanks, Bill. Writing that hospice care story was hard for me personally having never been in situations where families were being prepared for death and, in a way, embracing it … it was a great learning experience for me and I feel really thankful.