Our TBI Story

Our TBI story began on November, 8th, 2013, when my boyfriend Patrick was struck by a car while walking home at night. That horrific day set our lives on a course unlike anything we’d ever known, and since then, nothing has or ever will be the same. Even though our TBI story is only a few years old, our love story goes back 16 years to high-school where we first met.

I met Patrick as a sophomore in the band program of our Catholic High School in Absecon, NJ. He sat behind me in class, and one day he handed me a pencil that I’d dropped on the floor. All I remember about that day were his eyes; a vibrant, army-coat green, mischievous, gentle, pained and so very warm. And that was it; I was in love.

We built a friendship talking on the phone at night, but the only place we interacted at school was in the auditorium. I had found him there one day on my lunch period playing in the dark, and just sat down next to him. I waited for him to speak, but he did’t and neither did I. It became our daily ritual. Sometimes we ‘d lie on the carpet, studying the ornate ceiling tiles above us; our polyester uniforms just barely brushing, and the toes of our shoes flirting with each other.

Though we never had a conventional relationship, Patrick sparked something so catalytic in me that I began writing music.  My first record, “Coin and a Half Girls”, was a collection of heartbreaking songs about us filled with teenage angst and longing. After college we lost touch, but never forget each other. At 30 years old, (now a professional musician), I reconnected with Patrick at the last gig of my summer tour. We fell in love instantly, and teamed up to produce my 3rd record, The Giant Unquiet. We locked ourselves in my apartment for a month to produce it and became enveloped within a seamless creative flow that was unlike anything I’d ever known.

Six months later, on the night of Patrick’s accident, things had unfortunately taken a difficult turn for us, and we hadn’t spoken in 3 months. Patrick was living in Florida. I on the other hand, was at a music convention a thousand miles away in Los Angeles, CA. I was about to embark on a national tour in an RV that I was all set to purchase that weekend. It seemed our lives were separating again, and possibly for good. But for some reason I will never know, Patrick thought to call me that night. When I answered, there was silence. He said to me “Are you ok?” I replied, “Yes. But, are you OK?” He exhaled, long and deep, with a palpable pain in his breath, and hung up.

Two hours later he was struck by a car walking home. It was the last time I ever talked to that version of Patrick.

The next morning I awoke with a terribly bad feeling in my gut that I couldn’t shake. By the afternoon it was so intense that I went upstairs to my hotel room to lay down. I couldn’t shake the idea that Patrick was hurt. I tried to contact him, and when several hours passed without word, I called his Aunt. When she answered, I could tell something was terribly wrong. “Tell me what I don’t want to know,” I said. Somehow, I already knew.

I only remember flashes of that night. Words coming at me like knives.

……Struck by a car.

……Traumatic Brain Injury.

……Brain-dead.

I immediately got on a red-eye to Florida, leaving behind the convention, my record and my RV. Upon my arrival, the doctors told me that miraculously there was brain activity after all! As soon as I saw him, I knew I wasn’t leaving him, and the next 10 days were the worst I’ve ever known.  Patrick suffered a Depressed Basilar Skull Fracture, DAI (shearing of brain stem), an acute subdural hematoma, multiple bruises to the brain, a shattered knee and femur, and a broken arm. Seven days later, while laying in a coma, he suffered a post traumatic stroke. He had to have surgery to remove a large piece of skull to relieve the pressure of his swollen brain. They told me that he had a 3% chance of surviving, and an even smaller chance of ever coming out of a vegetative state. They said he’d be paralyzed on his left side. They said to take him to hospice. Thankfully, that was not his parent’s choice. As the days passed, while he lay deep in the darkness, I played our music for him on earbuds, talked to him, prayed over him, and never left his side.

I flew to Indiana 10 days later to pick up my RV and drive it home. In the time I was away, Patrick began to open his eyes, but he remained minimally conscious. He got moved to an acute rehab facility, but was not doing well. I got word that he would probably need to be moved to an adult nursing home, so I made arrangements to fly back down to Florida. On the night I got there, a miracle happened: Patrick squeezed my hand for the first time. The second night, he grabbed his trache, delayed, but on my command.

I basically moved into the hospital. The nurses gave me a cot to sleep on, a shower to use, and even snuck me food trays. I began doing everything I could to stimulate him any way I could. I was humbled by the way in which I could get him to respond. It was all touch and go at first, and nobody believed me when I said he was truly improving, but soon enough it was obvious that he was coming around! The therapists began inviting me into his sessions and letting me work with him. I watched him slowly awaken, and spent almost 40 days living there with him. As he fought to regain his life, I learned how to be a caregiver for him. As I learned more and more about brain injuries, it turned out that I had an undiscovered passion within the science surrounding various therapies for the brain. I also was happily surprised to see that I had an undiscovered talent for working as an unofficial therapist!

Patrick had a cranioplasty to repair his skull on January 20th, 2013 and came home on February 3, 2014 to his parents house in Absecon, NJ, where he lived until the following October. Unfortunately just a few months later, the plate in his head had to be removed due to an infection.  Over the next 8 months, I threw myself even harder into becoming the strongest, most well-informed advocate possible for Patrick. Due to matters not within my control, he received very little therapy in those 8 months, so in an attempt to help him move along, I began doing structured therapy with him myself. The miracle of our story is that though I am NOT a therapist, and am not professionally trained, the love and connection between us allowed amazing things to transpire through our combined effort.

In October, 2014, just before the one year anniversary of Patrick’s accident, we beat the odds and moved in together into our first apartment in Atlantic City, NJ! (Studies show that 90% of all unmarried couples who face a TBI break up before the one-year mark). On November 8, 2014 we went to a lake and had a very special, very intimate “rebirth-day” ceremony together.

Patrick officially began consistent weekly outpatient therapy an entire YEAR after his injury. We worked night and day at it, always exploring new tools and ways to heal, and making it our full time job. The therapists had low expectations, since the first year is BEST time to make the MOST gains, but once again we proved them wrong. He made TREMENDOUS improvement in his 2nd year of recovery. In 2015 he began trying to play the drums again with almost no use of his left side. A year later, he has almost 95% use of his left arm  and hand. We credit music a a big helper in rewiring the brain.

In the summer of 2015, Patrick underwent his 4th and 5th surgeries to his head in two years. He had a tissue-expansion surgery in which expanders were placed under the skin of head so that new skin could be grown for his 2nd and final Cranioplasty. (He had been without a skull for most of his recovery). On July 16th, his head was finally restored with a synthetic plate. Amazingly, he suffered yet another infection and spent another month in the hospital; contracting c-diff, having seizures, and eventually spending weeks in an inpatient rehab. However, the skull stayed in place, the infection cleared up, and Patrick came home in August. He has had no further complications.

Today, 2 1/2 years after his accident, Patrick is doing marvelously well given the extent of his injuries. At the time Patrick came into my care, he was on 9 medications. We have pursued a holistic approach to his health, and thanks to the use of diet and alternative modalities such as Reiki, Meditation, CBD oil, NeuroFeedback, Brucker Biofeedback, Music therapy, Animal Therapy and so on – Patrick is now only on ONE medication for seizures, and managing his emotions much better med-free.

On Patrick’s 2nd rebirth-day, we went on a fall-foliage road trip to see the leaves change in New England. It was a reminder to us both that just like TBI, life is meant to be lived in seasons. It was on this trip, that our most amazing feat to date occurred: Patrick ditched his wheelchair once and for all!!! Then, in March of 2016, he ditched his walker and began walking unassisted. In the spring of this year, Patrick began adaptive yoga to battle his Ataxia and spasticity and is making wonderful gains. Alongside Brucker Biofeedback Therapy, yoga has been our greatest tool in the TBI arsenal.

It’s been a wild, beautiful, terrifying, heart-wrenching, soul-shaping, love-defining, journey for us both. There aren’t words to describe the mess of emotions that a TBI warrior engages on a daily basis, but one things is for certain: the process makes you strong as steel. Patrick and I began this blog, “16 Petals of Blue Light,” (which is a play off a yoga chakra, forget me not flowers, and the number of years we had known each other at the time of his accident), so we could educate and raise awareness about brain injury. We are the first dual-sided, co-authored TBI blog out there!

So thank you for coming along for the ride with us, and God Bless You on this difficult but very beautiful journey!