I Love You Jeanie Tuttle/ ALS Sucks!
Buda, TX
Photo Credit: Charlie Tuttle
Enriching Music: Blackbird, the Beatles; I'll Fly Away, Emmylou Harris live
To me, this is the most monumental and meaningful photo in the series.
Jeanie Tuttle has ALS. She is the former librarian at the school where I teach. Her family knew nothing about the disease before she was diagnosed in 2012. Her husband quit his job to care for her because it made more sense cost-wise to the family. He loves her and considers it an honor to be able to care for her through the duration of the disease.
This photo was taken Sept. 15. I'd been to visit Jeanie and Charlie about a month before and told her about the series. To pep her up, I'd text Charlie some of the photos I'd taken - Washington Monument doing the Hook'em Horns sign, others. He thought it was a hoot and said send more, though, as a Longhorn, I told him it kind of made me feel a bit icky that every time I texted him a photo that Aggie fight song would play to alert him to it because that's his dang ringtone.
The Tuttles are great people. They are the type of people who make you say, "Why in the heck did this happen to them?" They are the type of people who make you say, "What the heck am I complaining about?"
Charlie joked about taking a photo of me in the dress with Jeanie at a truck stop, but by the time we got around to the photo, Jeanie was no longer able to leave the house.
She couldn't talk. She was sleeping about 18 hours a day. She had to have a washcloth lodged in her mouth to absorb her saliva because she could no longer swallow and may choke to death. When you enter their house there is a prominent sign on the door that reads, "DNR instructions in the kitchen." It took me a minute to absorb that. It means Do Not Resuscitate.
It was Charlie's idea for me to hold the oxygen mask and the mask that pumps and pulls out oxygen for Jeanie to breathe, "like a bouquet," he said. "I know it seems macabre, but it has meaning," he said. "People need to know about this disease."
I asked Jeanie, who could barely nod, to blink when her response was yes to my series of questions. "OK here is what can happen with these photos: 1.They can just be private for us. 2. They can go on a blog. 3. They might get shown in a story. 4. They may go into a book." Blink with what you think is OK for you. Private - no blink; blog - blink; photos in a story - blink; photos in a book - blink.
She wants to be known. A beautiful red-headed, Texas gal who read stories to thousands of children and recorded them in her lovely Texas drawl. She had a zest for books and inspiring readers. She would instill Charlie to make and paint cutouts and props for the library to inspire children every year in reading contests.
That's what I thought anyway. I was wrong.
Without hesitation, when I asked Charlie how Jeanie wanted to be remembered, he said: "Oh, her love of Jesus."
He told me she realized something was wrong when she couldn't pronounce certain words like she used to do. When she found out, she recorded tons of books with her voice for the library and sent flash drives to all of her nieces and nephews on both sides of the family. "Now Jeanie can read to them forever," Charlie said.
A teacher friend and I prayed with Jeanie before we left. Charlie left the room. "You women pray, Your prayers are powerful." We prayed silently and held hands all three of us. We all cried. My silent prayer was that when God finally decided to take her, that it was peaceful without pain, without choking. I left thinking I will never see her again. I kissed her goodbye and thanked her for her friendship and told her I loved her.
I got to see Jeanie one last time on Oct. 3 with several teacher friends. By that time, Charlie said Jeanie was losing lots of blood and nurses suspected she had ovarian cancer as well. She would likely lose so much blood, she would drift off to sleep and not wake up, he told us.
"What a way to go, peacefully, drifting off to sleep. Yeah for cancer!" he sarcastically laughed. "I bet you don't hear people say that very often? She's ready. She said she's not afraid." He always says, "Jeanie told me," though she can't talk anymore and they communicate with mostly blinks now.
This last time, we stood in a circle and prayed, teacher friends and I - Jewish, Catholic, Protestant, holding her hands in a circle. If it hadn't been such a sad moment, it could have been the opening line to a joke, "So this Catholic, Jew, and Protestant walk into…" I got to tell her one last crazy story about an adventure I'd had. She could smile a little but was on heavy pain medication wearing an oxygen mask.
Here is my take away on this beautiful, sad moment that was intimate, loving, and pure. I have encountered many deaths in my life and seeing folks for the last time and knowing it would be the last time or close to it.
I have zero regrets on each encounter.
I don't have any "I wish I would have spent more time with them." "Why didn't I go see them?" And that's a beautiful feeling.
Love the people you love when they are alive so they feel that love and you feel that love for them. If they die before you get a chance to tell them, it is too late.
When you go to a funeral, it's too late. That mourning is for you. It is for your loss of them.
I am free of that feeling and I never want to have it.
If you love someone, tell them. Write them a letter. Let them know it while they can hear you and you can hear yourself say it. But don't ever just say it, do it, show it. I have always lived my life that way.
I have co-workers whom I love and I tell them, "I love you." They may think it's weird and I don't care. I want them to know how I feel.
I tell my students as they exit my classroom, "I love you. I'll see you tomorrow. Get out of here!" I mean it. I don't really mean the get out part, they dawdle and I like it. That means they like being in my classroom and that is one of the most ultimate compliments you can pay a teacher.
I came to realize, over the last few years of life's tribulations that I had numbly settled into talking the talk – to my own children, and to my students, and even to myself. It was typical do as I say, not as I do. Go out and do great things! Be your best! Love! Be alive! But I was not fully, truly living by example.
Now I am. I am a revolution of action and love, even if it just affects those caught up in my minutia gravitational pull.
Now I am. I am a revolution of action and love, even if it just affects those caught up in my minutia gravitational pull.
It's not lost upon me that I may be the only person who tells my students they are loved that day. Some of my pupils think it's weird and tell me so. I say, "Haven't you ever had a teacher say I love you?" They say 'no.' I say, "Well, I do and I want you to know it. I don't care if you think it's weird. I love you. I want you to have a happy kid's life and I want you to be safe when you're away from me. It's not weird for me." They just look at me funny and cock their heads. Most of the time, by mid-year, they are giving me hugs as they exit and are saying, "I love you" back to me.
But I will tell you, it gives me peace to hug my kids and to tell them I love them - my own too. If something happens to any of them, I know that they will know I loved them.
And pure love, not clouded by preconceptions, prejudice, over thinking, deception, is a good thing for everyone. It is living joy.
And pure love, not clouded by preconceptions, prejudice, over thinking, deception, is a good thing for everyone. It is living joy.
Jeanie died a few days later on Oct. 8. I loved her and still love her. I have no regrets.