Detour from Normal (32 page)

Because of my mental state, I'd lost a few social skills. I wasn't getting them back any time soon, so by trial and error I had to learn new ways to interact with people. One such way was to offer choices. It required much more thought and creativity than just blurting something out, but the results were more satisfactory. I genuinely wished to talk with my parents, just not about fixing me. So instead of being confrontational and getting nowhere, I decided to give them a choice. I looked directly at Mom and Dad and said:

"We can continue down this path if you want. If we do, our conversation will be finished. Or you can change the subject and I'd be happy
to spend time with you. I'll give you ten seconds to decide what you want to do." With that, I looked at my wristwatch and mentally began counting the seconds down in unison with the changing second digits.

Rather than take the time to decide, they simply ignored what I'd said and continued from where they'd left off. Ten seconds of listening to my parents unable to veer from their own agenda was agony. At the end of the time, they hadn't even taken a breath. When the last second transpired, I looked at both of them and said, "We're done." I stood up and escorted them to the door. I hugged Mom and shook Dad's hand.

"Think about it," Dad said. I nodded my head.

As they departed, I turned and knocked on the nurses' station door. The nurse opened it and I said, "I'd like to request that I have no more visitors."

"Are you sure?" she asked.

"Yes. No one," I responded.

Beth came to visit me the next day, and they turned her away. I watched the clock pass 2:00 p.m. and knew it would happen, but I never expected the empty feeling that came over me. I missed her. Even though she mostly talked about more testing or another doctor or some other way we could try to help me, sometimes she was just herself. It was like someone with Alzheimer's becoming lucid for a moment. I don't say that in a mean way, but my family and friends all seemed sick to me in a similar way that I seemed sick to them. I couldn't let go of being sick, and they couldn't let go of trying to fix me. They were like codependents to an addict.

The problem was that many of them seemed to think that I had a choice in being the way I was, that like a drug addict choosing to be sober, I could choose to be normal. What they didn't understand was
that, like it or not, my body was forcing me to be that way. I could no more fix myself than I could jump over the moon.

One thing I did realize: I was safe. I was finally safe. In a place where everyone was a danger to themselves and others, I had found safety. All the seizures, the whirlwind of ambulance rides, police rides, hospitals, and psychiatric institutions were finished because I couldn't get out, and now no one could get to me. I breathed a sigh of relief.

Later I knocked on the nurses' station door again. The nurse got up from her chair and walked to the door. She unlocked it and asked, "Yes?"

"I'd like to give my wife permission to visit me again," I said. From then on, just as she had prior to me shutting her out, Beth visited me every day, and I lived for her visits.

Chapter 27

THE BURDEN

I understood what Dad meant when he said I would be a burden. He was saying that they were almost eighty years old, they had their routines, and they had things set up just the way they liked for their golden years. The last thing they wanted was to have to take care of one of their children again. It did, however, make me contemplate what being a burden meant. Though I never would have imagined it, over the next two weeks I was going to become an expert on what a burden was. I was going to have a master teacher on the subject: Matthew.

"God damn it, this food tastes like fucking garbage!" I heard a tinny, raspy voice yell. I looked around and couldn't locate the source of the angry voice. "They never fed me dog food like this at Estrella. They treated me like a
king
over there!" Then I noticed it was coming from a hospital bed parked in the corner, shoved as far away from everyone as possible. Right about then a tray went flying out of the bed, sending finely chopped food everywhere, the kind of food they gave Grace, who
had no teeth. I could hardly make out the frail man covered in blankets there. His name was Matthew.

Matthew had been transferred to Gracewood because Estrella, the nursing home where he'd been, could no longer deal with him. No one could deal with him. He was the epitome of a burden. No one wanted him. He'd been booted out of every place he went, and that only made him more ornery. Everyone at Gracewood avoided Matthew. Not only did he stink to high heaven from his poor hygiene, but he also would verbally bite anyone's head off if he or she got within sight.

Well, he seemed like a perfect project for me. In my book it didn't matter what his sins had been yesterday; what mattered was what his potential was today. Matthew had spirit, that's for sure—it was just misdirected. Matthew was a magnet and I was steel. Over time I migrated closer and closer to Matthew. I did get my head bitten off a few times before I broke through. But once I was able to talk a bit with Matthew from a distance, he settled down. As he did, the staff started to work with him and build his strength. In the process he started getting bathed regularly. All around, he gradually became more approachable.

Matthew was the most emaciated person I'd ever seen. He was my height—about five foot eight—but he couldn't have weighed more than a hundred pounds. Soon Matthew's bed was no longer lying flat; it was inclined and turned so he could watch TV like anyone else in the main room. Before long he was strong enough to get out of bed and walk a few wobbly feet to a table for meals. The staff used tricks like that to get him to work on building his strength. I started sitting with him at lunch occasionally. We didn't really speak much; I just said hello and politely conversed while we ate. One day I witnessed a miracle. Matthew got himself out of bed (which was a long, drawn-out process),
stood hunched over, and hobbled a few feet to the nearby phone. Then, in slow motion, he picked up the receiver and began pressing buttons. He unsteadily moved the phone to his ear and, after a lengthy pause, asked in his scratchy voice, "Is this Papa John's Pizza?" I felt like cheering. He continued slowly and distinctly. "I'd like a medium thin-crust pepperoni, please." He then gave the address from the paper on the wall near the phone. After that he shouted for the nurse and had her get some of his money, which they kept in an office safe. He then hobbled a few steps to the table, sat down in slow motion, and waited patiently for his pizza to arrive. He ate alone, but right then and there, I made it my goal to share a pizza with him some day.

As fate would have it, my obnoxious, snoring roommate, Robert, was freed one day to return to chain-smoking cigars at taxpayer expense, and his bed was vacated. I was so excited; I was finally going to get some decent rest. Within hours, however, they removed the bed and wheeled Matthew and his hospital bed into the spot. I was immediately thankful that I had invested the time into building a relationship with Matthew, or I would have been proverbially screwed. Matthew was in that room nearly twenty-four hours a day after that, so I saw more of him than ever.

In the beginning, Matthew only spoke to ask me to get him some water, an apple juice box, or some graham crackers (he was especially fond of those). Soon we were talking about everyday things such as our families. One evening he made a comment to Jose and Antonio, the evening PAs, about needing a few spotters to do something they wanted him to do. My ears perked up immediately. Spotters were people who caught gymnasts if they fell while learning or performing a difficult trick.

"You must have been a gymnast," I said. "I haven't heard anyone use that term in a long time."

"Yep, rings for three years in high school," he replied.

"Me too, I competed on the pommel horse."

I would have never guessed that Matthew, a frail man who could hardly hold himself up, had once performed on an apparatus requiring more strength than just about anything I could imagine. I learned that as his gymnastics career was ending, mine had just begun. I was a very strong young man back then and could press from an "L" to a handstand on the rings myself, but that was about all I could do. There was no way I could have done something like an iron cross or an inverted planche, and Matthew had been able to do those things and more.

I immediately felt a kindred spirit with Matthew, and from then on I saw him in a different light. As we lay in our beds late one evening, Matthew shared stories about himself as a young, underage, red haired troublemaker. He had a fake driver's license and would take his buddies driving down Central Avenue in Phoenix on Saturday nights when everyone was cruising. It was the late 1960s and all the teenagers were out in force in their fifties and sixties hot rods. Afterward he'd buy them all beer using his fake license, and they'd all head to their favorite pizza joint. He raved about that restaurant, which is still there today.

Over time Matthew and I shared other stories. We laughed and Matthew grew stronger. I convinced him that he should get out of there and into a place that provided physical therapy. I bet him that he could gain all his strength back and be independent again. Right away he requested double portions at mealtime and started to beef up. It was a long, slow process, but I watched him change before my eyes.

The most difficult thing about having Matthew right next to me was getting quality sleep at night. Matthew had no call button on his bed.
When he had to go to the bathroom, he would start yelling, "Nurse... nurse...nurse...," in his frail, scratchy voice. It couldn't be heard through the door, so I started leaving the room door open just enough that someone might hear. Even then a nurse would only hear if she happened to be walking by, which only happened about once a night on the grave shift. So I took it upon myself to get up and find a nurse whenever he needed to go to the bathroom. That was usually a fifteen-minute ordeal, from me getting the nurse to the nurse helping Matthew up, into the bathroom, and back. By then I was wide awake.

All of that usually took place around 2:00 a.m., then again at 4:00 a.m. I knew I was taking chances with that. I hadn't had a seizure since I came to Gracewood and hadn't even used medication to get to sleep for a while. Even after taking an Ativan again, I was unable to get back to sleep after Matthew woke me up. The problem was that I was always anticipating him waking me. It was as if every time I would near sleep, someone poked me.

I never complained, and Matthew started informing people that I was his angel. I sacrificed sleep every night, and after three nights with only a few hours' sleep, the monster came calling. It occurred around 9:00 p.m. while most patients were watching TV. I felt him stir and sought the nurse right away. "I'm starting to have a seizure. I need Ativan
immediately"
I implored. In no time the monster was after me. Some old memories had returned, and I recalled "changing up" once again. I ducked and dodged; I never ceased moving. I paced, I grimaced, I growled, I drank water from a cup and splashed the rest on my face. Most people paid little heed since the place was full of individuals exhibiting similar behavior on a regular basis. There were a few who recognized that I was not myself and asked what was going on. "I've got a tiger on my tail" was my response. They laughed.

Though I made light of my struggle, it was serious business for me. If it was within my power, I was never going to submit to the monster's will again. After ten minutes or so, the nurse brought me the Ativan and some water. I downed that pill as quickly as I could, and then returned to fighting off the monster. After a few more minutes, the drug took hold. I closed my eyes and in my mind I faced the monster head on. Though he towered above me, it felt as if we were equals on the battlefield for the first time. He clenched his gnarly fists, tipped his head back, and let loose a mighty roar that reverberated to the farthest reaches of my mind. Then he lowered his head and squinted at me with his glassy, soulless eyes. He hissed and reached for me one last time, but as he did I opened my eyes, and as quickly as he had first appeared in my life, he was gone. With an exhausted sigh of relief, I made my way to my room and slept. After that close call, I made sure to take power naps whenever possible as insurance against the monster's return. I never had another seizure and never had to face him again.