My Life, Deleted (19 page)

I felt a smile creeping across my face; I didn't know why, but I couldn't stop it and I didn't particularly want to. Then it hit me. I now had the information that was going to allow me to move on with my life. I didn't have to sit around and wait for answers anymore. I finally had the answer to why I'd lost forty-six years of my life, how my life had been deleted in an instant.

I must have sat in my car for twenty minutes before I realized that I'd promised to call Joan. She picked up so fast she must have had her cell phone sitting inches from her fingertips. “I have no blood flow going to the frontal and temporal lobes of my brain, and that's the reason I can't remember my life,” I said.

“So when is it going to come back?” she asked, clearly not as happy as I was about this news.

I realized then that although I'd received closure from the diagnosis, this was not what Joan wanted to hear. She wanted the old Scott back.

“She said it could take up to a year and a half to return, but if it goes past that then it might be permanent,” I said.

There was silence on the other end of the line. “So it may never return,” she said, her voice cracking as if she were about to cry.

“Yes, but it could. And I can move forward with my new life now that I know I'm not crazy. There is actually something wrong and they found it,” I said, hoping she would join in my feelings of satisfaction and resolution.

I thought I could hear Joan crying, only she didn't let on, trying to sound like she was okay with the news because I was. But I was more than okay. I felt great. The prognosis may not have been what Joan wanted to hear, but for me it was just what the doctor ordered—and that was
closure.

Chapter 19

T
HE DAY AFTER MY BIG EPIPHANY,
I woke up feeling so good that I set off first thing for the Brain Injury Association of Arizona in Phoenix. I'd finally learned how to use the navigation system in my car, and it guided me to their downtown headquarters without missing a step.

I'd come across the organization during a Google search for doctors, therapists, and other resources for brain injury patients and had called the office.
I can't be the only person suffering from this condition. If I can find others, it would do us all good to share information and learn from each other.

The group's executive director, Mattie Cummins, told me she'd heard of retrograde amnesia but she'd never met anyone who suffered from the condition. I told her that I might stop by sometime to chat, and she welcomed the idea, so I didn't think she'd mind if I showed up on her doorstep without any notice.

Mattie was a tall, perky woman who smiled frequently. In her late thirties with dark brown shoulder-length hair, she happily led me back into her office, where we discussed my accident in more detail. Trained as a social worker, she was very open, insightful, and extremely knowledgeable about brain injuries, so much so it almost seemed as if she'd had one herself.

“How do you feel?” she asked, posing a question that, curiously, no doctor had ever asked.

“Lost,” I said.

“With a brain injury, that's very common,” she said. “But you are so far ahead, functioning-wise, of so many people with brain injuries. You look normal, you walk normally, you're able to carry on a conversation. . . .”

“But I don't know who I am,” I said. “I'm walking around in a fog. Not having any memories keeps me from making any decisions based on prior experiences.”

I asked if she could recommend anything to ease the adjustment to my new life, and she suggested that I get some counseling. I'd heard that before, but I had an idea of my own.

“I came here to see how you could help me, but more important, I came here to see how I can help the Brain Injury Association,” I told her. “I want to become involved, and I want to start telling my story to others.”

Mattie looked stunned, then she conveyed just how surprised she was. I'd received such devastating news only yesterday, she said, and yet here I was, offering her
my
help? “It is unbelievably incredible to me that you're here today,” she said. “I don't know exactly how, but I'm going to figure out a way to make you a part of the Brain Injury Association.”

After talking with Lisa some weeks earlier, I'd realized that I wanted to tell my story to a broader audience, I just didn't know how to go about it. When I found the Brain Injury Association, it became clear to me that this was the way, and after receiving my news from the doctor, I figured this was the time. Now, with Mattie's help, I was going to make it happen.

A month or so later Mattie called to tell me about a sixteen-year-old girl named Taylor Ward from the East Valley of Phoenix, who had fallen in April, hit her head on the bleachers while playing volleyball for her school team, and ended up with the same condition as me.

I couldn't believe what I was hearing. Joan and I had been searching for months on the Internet for other people like me. I was amazed to learn that this young girl lived only ten miles away, and she too was probably wondering who she was and how she was going to make it in this world.

“Would you be interested in speaking with her, and kind of giving her guidance or reaching out to her parents?” Mattie asked.

“Absolutely. I would love to speak to her,” I said. “That's what I want to do. That's how I think I can help.”

Mattie said she would give the girl's parents my phone number and tell them to call me when they were ready. She told me to sit tight and wait for their call, explaining that parents of brain-injured children usually want to introduce help only if and when they feel it is appropriate.

I understood this, but I was eager to talk to this family and let this young lady know she wasn't alone, that I could be of some assistance by sharing how I'd coped with losing my identity and relearning the vast amount of information I needed to survive.

Mattie was brimming with ideas that day. She asked if I would also be interested in speaking with soldiers coming back from the war who had suffered posttraumatic shock and brain injuries from the IEDs, the explosive devices that terrorists had planted along roadsides in Iraq. She said I would be a good spokesman for the organization to help educate health care professionals and family members of the brain injured as well.

“People would be interested in speaking with you because you've played in the NFL,” she said. “This would be good way to break down some of those barriers and help others overcome their disabilities.”

“Yes,” I said, adding that she could call on me anytime. “I'm more than willing to help in any way you see fit.”

Mattie then asked if I'd be interested in becoming a member of the organization's board of directors.

“I would be honored to be considered and would do my very best to try to make a difference,” I said.

She said I would be one of only two board members who were brain injury survivors, which made me feel very proud. With the connections I was making through the NFL alumni board and now this, I hoped I could somehow connect all these key people to make an even bigger impact.

Taylor Ward's mother, Kathy, followed up with me a couple of weeks later. “We would love to get together and for you to meet Taylor, but she isn't ready at this time,” she said, adding that she hoped that day would come sometime in the near future. “She's mad because she has no friends. No one stuck by her. It's been a real ordeal.”

I told her that I wanted to do anything I could to help her daughter heal, and she could call me when she was up to it or needed a friend. “You can contact me twenty-four hours a day,” I said. “I'm up all night usually, so call me anytime, even if it's in the middle of the night. If anyone would understand what she's going through, it would be me.”

Kathy seemed grateful for the offer. “My daughter can't sleep either,” she said.

After speaking with her, I felt bad for the teenager with the same name as my daughter, and I looked forward to the opportunity to try to help her somehow.

I went to discuss Dr. Arlen's prognosis with Dr. Lanier, and she seemed somber when she entered the exam room. “How did you take the news?” she asked.

“I'm not quite sure why I'm okay with it, but I am,” I said.

Once I told her I felt optimistic about the future, her mood seemed to lift. She then delivered a concurring second opinion, surprised and relieved that I was okay with it. Dr. Lanier said she and Arlen also agreed that I should see a therapist specializing in head trauma, who could help me improve my coping skills.

Asked how the Cymbalta and my pain meds were working, I said I felt much more even these days, had more control over my emotions and headaches, and wasn't experiencing the same extreme lows as earlier in the year.

“I suggest you stay the course with these current medications and try to stay strong,” she said. As our family doctor, Lanier was Joan's physician too, so she suggested that Joan seek counseling as well so we would both be prepared to travel the long journey of recovery and rebuilding still ahead of us.

By this time, I'd also sold our two Jet Skis. With the recession still raging, we'd had some interest in the yacht but no offers, so we'd lowered the price from $350,000 to $289,000 to $250,000.

The financial pressures were growing heavier by the day, and I was feeling even guiltier that I was unable to provide for my family the way I used to. I'd been doing my best to relearn my aviation business, but after a couple of months I had to face the fact that I wasn't going to master it with my limited knowledge base. That said, I was determined to find a new way to make a living.

Over the past couple months Mattie had come up with an idea that I thought just might work. “Why not start speaking publicly about your accident and your amnesia?” Mattie suggested. I was intrigued by this idea, which I'd never considered before.

One evening I broached the possibility with Joan. “What do you think about me becoming a professional speaker and talking about our story?” I asked.

Joan's first response was to laugh at the irony. “This is funny,” she said. “You never would have gotten up in front of people to talk before, let alone tell such a personal story about yourself and us or a traumatic event that you'd gone through. But I think you would be great at it, and people are going to be fascinated by this story.”

I didn't really understand why I would've been reticent to tell my story. It was so different from my thinking now. “Why would I not want to speak in front of people? What's wrong with that?”

“You're just a very private guy, and you don't disclose much of yourself or family to anyone,” she said. “We had our company picture taken, and you're not even in it.” Nor would I go to networking events, she said, choosing instead to send her or someone else to talk up the company to strangers.

“Well, I think it's a good idea,” I said, “and Mattie said I can make a living at it.”

Joan was starting to get excited about the idea too. “Yes, you can,” she said, “and maybe we can speak together about how we've both gone through this.”

The two of us wasted no time brainstorming ways to go about this. We both had stories to tell, and with Joan's previous experience in setting up our companies' websites, she was well versed in how to proceed. She suggested I start blogging and Twittering, set up Facebook and LinkedIn accounts, and start journaling about my experiences.

I had no idea what most of those terms meant and felt somewhat overwhelmed.
Can I do this? What if I fail? Or worse, what if my story just bores people?

But Joan helped me push ahead, educating me along the way, and together we set up accounts for me. Next, she hooked me up with a website developer named Kevin, a social media expert she'd met through a friend who had photographed our airplanes for advertising purposes. Although Joan was working full-time, she seemed excited to help me start my new career.

I met with Kevin several times at my office in Tempe. Once he heard my story, he was taken aback but inspired and took a personal interest in getting me up and running. “People can relate to the inspirational story and all the trials you're going through,” he said. “It's captivating, and people will want to read more.”

I'd read blogs but didn't understand at first how writing one of my own would help me. After Joan and Kevin explained exactly how a blog could be intertwined with the social media I'd been learning about, I was convinced as well. In the beginning this was very difficult because I was still learning vocabulary words. But I soon found the thesaurus tool in Microsoft Word, which quickly helped me find new words and their meanings. The more I wrote, the faster I became, until it seemed like the words just flowed from my head to my fingertips and I watched them form on the computer monitor. I wrote as much as my headaches allowed, thrilled to have found this new way to occupy myself during those sleepless nights. I was relieved to be able to describe my daily experiences and challenges and express thoughts I feared would upset Joan.

I often cried while I wrote because it stirred up all kinds of emotions, fears, and anxieties, but even if some demons were still too dark to release, I no longer felt so alone after purging the rest of them.

Every day I felt a little better as I learned the new technology that would enable Joan and me to build a new career together. I could think of no better way to spend the rest of our years as empty nesters than touring the country, giving speeches, and seeing places that would be all new to me.

Taylor was skeptical at first, based on the old Scott's distaste for traveling. “Oh, my God, are you serious?” she asked incredulously. “Are you honestly going to travel all the time?”

“Yeah, it would be great,” I replied, wondering why she was so surprised.

Taylor informed me that I used to get short-tempered with any delay and minor obstacle in an airport or in the car. And some of that hadn't changed, Joan pointed out. Like the time I yelled at her to punch our location into the GPS when we took a wrong turn on a freeway interchange in Los Angeles.

“What am I supposed to put in, the 101?” Joan had asked sarcastically.

We ended up in the right place eventually, but it took some patience on everyone's part. The interconnecting maze of Los Angeles freeways could be maddening, but I was optimistic that things would be different for us in the future.

“Dad, you get frustrated with everything when you travel,” Taylor said, still in disbelief.

“Not anymore,” I said. “New Scott.”