by Marlene Oliva, ADF client
Even in a close-knit family, Marlene and Jesse Ramirez were especially tight. As children, the siblings used to link fingers and promise, "We’ll always be together." Eventually, Jesse’s life would depend on the depth of his sister’s devotion.
Two years ago, Jesse Ramirez and his wife were in a horrific car wreck in Phoenix that left him with a broken back and neck, shattered arms and legs, and a traumatic brain injury. With his wife recovering from her own, less serious injuries and his parents out of town, doctors looked to Jesse’s sister, Marlene, for the authorization to begin medical treatment.
I was at work, behind the counter at the pharmacy, when my other brother, Greg, and the police came in. "There’s been an accident," they said. "It’s Jesse." My mind instantly began spinning in a thousand directions – what if he was paralyzed? It never even occurred to me that he might die. In my heart, that just wasn’t a possibility.
At the hospital, I tried hard to hold back the tears. I almost couldn’t recognize Jesse. His head was swollen – huge – and blood was everywhere. He was unconscious, but I held his hand and whispered, "I know you can hear me, Jesse. You’re going to make it. Stay strong. We love you."
Soon, Jesse’s wife had recovered enough to take over his power of attorney. Jesse himself was still in a drug-induced coma, and we all assumed she would do what was best for him. Instead, within days, she asked doctors to transfer him to hospice care.
"My brother hasn’t eaten since Friday. We have no power of attorney, no living will – how can they do this?"
We just couldn’t believe they were really giving up on Jesse, when he still showed so many signs of life. Even on the way to hospice, in the ambulance, he was moving. He actually smiled and waved a little at my dad. "This is ridiculous," the driver said. "He’s not in a coma." But when Dad told a nurse at the hospice what had happened, she said, "It’s probably involuntary."
Walking into his room there, my heart sank. There were no feeding tubes, no machines. I asked why.
That’s when I realized that they weren’t even going to try to help my brother get well. No food. No water. They were just going to let him die.
My family and I did everything we could to convince the hospice staff that Jesse wasn’t beyond help, but they wouldn’t hear it. In fact, they ordered us to leave. When we refused, they threatened to have us arrested. We couldn’t believe it. They tell us Jesse’s dying – and then that we can’t go near him?
It was just so wrong. This was my baby brother. I had to do something. I had to find someone, but no one would listen. No lawyer would take our case – until our parish priest handed me a number for the Alliance Defense Fund. That same afternoon, some neighbors brought over a number for a legal group they’d heard might help. Again: ADF. A sign from God, I hoped.
And it was. I told the ADF lawyers my brother shouldn’t be in hospice – that he wasn’t dying. "His coma is being induced," I said. "He’s responsive, when he’s not drugged up and filled with tubes." I was beginning to panic. "My brother hasn’t eaten since Friday. We have no power of attorney, no living will – how can they do this?"
"Don’t give up," they told me. And over the next few days and weeks, they kept telling me that. They kept taking my phone calls. They kept praying with me.
They were finally letting me see Jesse at the hospice again – for five minutes a day. That afternoon, I looked at him, lying there, starving, and I shouted at him, "Jesse, you have got to do something! Start coming around! Move!"
Suddenly, an idea came to me: "If you can hear me, snap your fingers three times!"
And a moment later … he did just that.
That was the turning point. With that, ADF was able to bring in an independent neurology expert. He studied Jesse, declared that my brother was mentally alert, and soon, I had power of attorney again. We moved Jesse to a nursing facility, and doctors resumed treatment of his injuries.
Two-and-a-half months later, my brother – the one who wasn’t supposed to recover – walked out of the rehabilitation center on his own two feet.
People seeing him today can’t believe how far he’s come. His broken bones and most of his neurological problems have healed. His main problem is his eyes. Those days without treatment, while his swollen brain pressed on his eye nerves, left him blind in one eye, and only able to see shadows with the other.
But we’ve learned so much, and made a deliberate decision to turn his ordeal into a positive thing. Because of what happened, I had the opportunity to testify before the Arizona legislature on behalf of "Jesse’s Law," a measure to stop surrogate decision-makers from denying food and fluids to patients who can’t speak up for themselves. The bill became law last year.
"ADF went through what we went through. They really were our family."
That success and this whole experience have gotten me interested in becoming a full-time advocate for the disabled. I realize now that every voice is important – and I want to speak for those who can’t speak.
I learned that, in part, from ADF. Their lawyers taught me not to stop trying, or trusting in God. Even when we called on a weekend, when they were off with their families, those lawyers were wonderful to us.
They really cared. You don’t understand, unless you go through what we’ve gone through … and ADF went through what we went through. They were our family. They prayed for us, comforted us, cried when we cried. There aren’t a lot of people in the world who’d do half of what ADF did for us.
"They were my voice when I had no voice," Jesse tells people, "and they raised that voice to get me the help I needed."
"We don’t do that here," the nurse explained. "We just give comfort care."