It started as a normal March day in Santa Fe enjoying espresso at a cafe. Afterwards, our car was broken into and Gen’s wallet stolen. That was the beginning of the worst day of our lives.
Crying uncontrollably, all of sudden she couldn’t feel her right arm. At her side, I caught her before she hit the ground. Gen was paralyzed, her words incoherent except for “help me.” As an EMT, I knew time was of the essence and we rushed to the hospital.
The scan of Gen’s head revealed the worst: a massive brain bleed in the left hemisphere. My heart sank.
Gen needed a top brain surgeon. Intubation and a ventilator on standby, flight medics prepared Gen for an emergency careflight to Denver.
Remaining calm during acute medical events is in my blood after years of caring for patients on ambulances and in ERs. My crisis management skills as a former CEO gave me a leg up on managing extensive logistics between multiple medical facilities, care teams and insurance. But my heightened emotions could play havoc in this important role for a loved one.
It was early morning when I arrived at the hospital in Denver…the top stroke center that treated Christopher Reeves. Most of the other stroke patients were twice Gen’s age. The head of neurology and the brain surgeon reviewed the scans and discussed the high risk of surgery based on the depth of her brain bleed.
I hadn’t slept for 30 hours and wouldn’t sleep for another twelve. The job of advocacy in a big medical system was important to Gen’s outcome. I felt focused but shaky.
The family and I convened with the surgeon and medical team. I fired questions about their experience with this operation; how many they’d performed successfully; mortality rates; possible outcomes and risks of surgical/non surgical intervention. The meeting ended without a conclusion as they continued head scans every 4 hours.
In the morning the surgeon said “we’re going in now.” There was a small window to perform the craniotomy and blood evacuation as the bleed moved close to her cranium surface. But once again those warning words… “She may never walk or talk again.”
Have you ever had one event that tested everything you ever learned in your entire life? For me, this was it. My college taught the skill of asking good questions. Then, from being a former tenacious CEO to a compassionate humanitarian to my medical care system familiarity…now more than ever I needed all of this.
Headed to surgery I whispered in Gen’s ear, “Do you know what’s about to happen?” She shook her head no and I said, “Gen, they are going to operate on your brain.”
For the first time she managed words. “Am I going to die.. are you going to leave me?” I hadn’t cried yet but after that I just bawled as soon as she was out of sight. I just needed to temporarily let go.
With power of attorney and the responsibility for Gen’s care decisions, I felt overwhelmed. She wanted only my decisions and just me in the room sometimes. I’ve never been in this spot and that singular trust was enormous pressure. Yet it was the greatest test of being in service for me.
I care so deeply for this woman, so maybe it’s a gift to be placed in this situation. At the same time, excruciating. I want to move towards the pain or I’ll be running away my entire life.
Gen and I had known each other for five months. A friend said, “Andrew, you didn’t sign up for this. Drop her at the hospital and wish her well..” No. I have the skills to change the course of Gen’s life. She deserves that gift.
This remarkable woman’s daily recovery was an absolute miracle. Each day, Gen could say another few words and move a finger or limb. From wheelchair to walker to cane. Six weeks of the best neurologists, PT, OT, speech therapists and even the famed exoskeleton robotic retraining device. Finally Gen was released to my care.
It was five months of full time care back home… physical recovery, pain management and panic attacks lasting 48 hours required patience. At times, she raged in an angry mental state as her brain desperately created new functional pathways. “Gen that’s not you.. it’s the broken portion of your brain,” I said. Sometimes she wished I’d let her die at the hospital. In the middle of the night she wanted to die but also didn’t want to fall asleep for fear of dying.
Gen describes our break up this way: “It was as though the person he loved had woken up hidden within a body and brain and was trying to crawl back to the surface. The person in the driver’s seat was not the one he fell in love with. She was dark and angry, fearful and cruel. I wanted to scream that I was still here, I was fighting that driver to regain control. To be the one he loved, the person I really was. But only I could hear myself scream. It was the fight of a lifetime. The fight for my truth and love and pain and fear and anger and sadness and beauty because they are all not that different. My heart is with him, always with him.” Gen and I are forever intensely bonded. I will always love her for the amazing woman she is.
Andrew Lustig, ND is the Founder/President of Global Outreach Doctors, a charity providing medical staff around the world in war zones, refugee crisis regions, earthquakes and other natural disasters. He lives on his horse ranch in Santa Fe, NM, not far from MEA’s Ranch campus which will open in 2023.