I developed a huge crush on Boz Scaggs when I first heard “Near You” from his 1971 album Moments. In 1994, the song “Lost It” from Scaggs’ album Some Change seemed particularly poignant to me. I listened to the song repeatedly as if I could not get enough of the sound of the guitar playing Spanish blues, Scaggs’ voice, and the lyrics. Recently, I got to see Scaggs perform with Donald Fagen and Michael McDonald in Interlochen, Michigan, as the Dukes of September. As the sun set and the stagehands finished preparing for the main event, I felt at peace. This was my first concert since my seizure and the discovery of my brain tumor. I wondered if the strobe lights or the loud music would affect me.
Research has shown that people prone to seizures need to be aware that certain triggers can cause additional seizures. During the opening song, a song I cannot remember, I noticed the dimming sky on my right as the sun began to set, and the open theatre, like a giant tiki bar, seemed to set the stage for trouble. I began to feel sick, the same feeling I had before I had a grand-mal seizure, also known as tonic-clonic, during the Zombie race in October 2011. The sky changed from peaceful to menacing as the strobe lights began to affect my vision. I considered telling, Jim, my husband, we should leave immediately, but I convinced myself I could get through this; after all, I was on powerful anti-seizure medication. I began looking away from the strobe lights and towards Green Lake off to my right where several boats had parked to listen to the music. As the first song ended, I felt greatly relieved: Nothing had happened, and I had figured out a coping mechanism: Look away from the strobe lights. Relax.
The Dukes of September played a mix of songs that included Motown hits, country, and songs from the bands they had been in. Scaggs sang a variety of his hits, and Willie Dixon’s “The Same Thing,” but he did not play the song I really wanted to hear: “Lost It.” I wanted to hear the acoustic guitar and Scaggs’ silky voice as he sang about “those ancient Spanish blues” and sang the words that had been stuck in my brain since 1994: “I saw myself awake, but still dreaming.” I was that person; always awake and always dreaming.
When my mother started showing signs of Alzheimer’s years ago, I became aware of her stories that seemed as if they were dreams, but also seemed to have a place in reality. There are those dreams we have where we imagine our future, but what about those dreams we have when we start slipping towards the past, seemingly moving away from the present and into those places in the past, that brought happiness and the promise of the future?
My father is now in hospice care at the nursing home where he resides. He is “awake, but still dreaming.” Prostate cancer, congestive heart failure, and vascular dementia are shutting his body and mind down. He imagines that my mother is alive, although she died in 2008. He tells me stories about Dodge City, Kansas. He refers to my thirty-year old son as “little one” and seems surprised when Matt shows up for a visit, fully grown, the years of being little far behind him. He tells me stories about Pekin, Illinois, a step even farther back in time from Dodge City. When I ask my father about one of his buddies from the nursing home, he tells me a detailed story about Cal pushing barges near Pekin. Lately, the Illinois River has become a vein in my father’s heart, and the subject of his dreams as he continues his excavation of memories. I wonder about the mix between dreaming, memory, and wakefulness. Will this happen to me?
I am not dreaming now as I realize it has been over two hours since the concert began, I am dancing, a weird sort of happy dance, clapping my hands, singing along with Scaggs’ “Lido,” and looking down when the strobe lights are too much for me. I know the band will not play “Lost It.” It’s a slow-burn of a song, and now the crowd wants upbeat songs they can sing along with or dance to.
Later, as Matt drives Jim and me towards home, I stare out the window at the night sky filled with stars, and I realize I want to hold onto this moment for as long as I can. But if this memory should slip away from me at some point in my life, I will dream of it and tell you this story.
In Sheryl Crow’s song, “Everyday Is A Winding Road,” she sings “I get a little bit closer to feeling fine.” I have been attempting to use this approach to my life as I negotiate the path having a brain tumor has put me on. This philosophy was recently in play as I waited for my flight at the airport in Manistee, Michigan, I noticed a small dog running alongside a man driving what looked like an oversized golf cart tugging a small plane. The flight to Chicago would take less than an hour, and this was my first flight without my husband since my brain tumor invaded my life. I figured the dog would bring me luck.
As the plane rose above Manistee and headed towards Chicago, I watched the incredible view of the coastline and Lake Michigan. Micki Holladay, Jeanne Beilke, and I had decided to rent a car in Chicago and travel Route 66 until we reached Lebanon, Missouri. Once there, we would cut to the west and travel to the Lake of the Ozarks and stay with Gretchen Leonard Steffen and her husband Robert. Rachael Livingston, the fourth member of the Pretzel Tour Gang, would be there waiting for us. Jon Jambor, another high school friend and dubbed an associate Pretzel, would also be joining us.
I had not seen Micki, Jeanne, and Rachael since August 2011 during Pretzel Tour 2. My seizure, followed by the subsequent discovery of my brain tumor, was in late October 2011. I had not seen Jon or Gretchen since Pretzel Tour 1 during the summer of 2010. I wondered if my language, memory, and emotional problems would be noticeable or if I would be able to hide them. I also have balance problems, and I wondered if I would fall down somewhere or wipe out in the middle of a tourist stop on Route 66.
Our adventure started well, and we stopped at a lot of tourist spots on Route 66. On the second day of our trip, Micki slipped her personal mix of music into the cd player. Nat King Cole’s version of “Get Your Kicks on Route 66” set the stage for our journey:
“If you ever plan to motor west, travel my way, take the highway that’s the best. A-get your kicks on Route 66.”
We were getting our kicks, no doubt about it. However, I was having trouble with the heat and humidity, so I tried to rest when I could and stay out of the sun. I think Micki and Jeanne were afraid to let me try my map skills after my most recent bout of getting lost, but during a torrential downpour, severe weather, a horrific bus accident that shut down 55 on both sides, and crazy detours, my mapping skills were put to the test.
We had been travelling along on Route 66, which parallels 55, when Mother Nature showed us who was boss. With Micki driving, Jeanne riding shotgun, and me trying to negotiate Google maps from my iPhone in the backseat, I thought I was guiding us to a little winery just north of Litchfield.
In what became known as the “Litchfield Incident,” I guided us to Litchfield, where water gushed out of downspouts and small lakes covered the streets. The sky stayed the same dark gray. As Mr. Blue Ball on my Google map happily bounced along as we made forward progress, we stopped in amazement as we reached our destination: Litchfield’s police department and fire station. No winery was in sight. From that point forward, I was relieved of my duty to guide us anywhere.
After a fantastic trip on Route 66, we set aside our quest for the history of the Mother Road, and headed towards Gretchen’s in the Lake of the Ozarks. As a child, my parents used to take me to the Lake of the Ozarks, and they had once taken Gretchen and me there for a weekend of water skiing and goofing off. I was overcome with happiness in this place that was somewhat familiar, but also so unfamiliar.
My friends were incredibly kind to me, reminding me to take my medication, helping me down the steep slope of Gretchen’s driveway, and encouraging me to traverse the floating dock. I tried to keep up, but I could no longer do so. I spent a fair amount of time sleeping or resting, enjoying the beauty of the lake, the joyous laughter of my friends, cuddling next to Gretchen’s dog Dakota, a Golden Retriever, and talking back to a very large parrot named Poncho.
After leaving Gretchen’s lake house, Jon led the way to Lawrence, Kansas, with Micki and I close behind. Rachael and Jeanne brought up the rear of our caravan. Jon parted ways with us, and the four of us had a beer and a bite to eat at the Dynamite Saloon. After walking around for awhile, it was time for Micki, Jeanne, and I to head east towards Chicago. Rachael had to head back to Tulsa.
We spent our last night together in downtown Chicago. I was too tired to go out for dinner with Micki and Jeanne, so I got comfortable in my bed and watched the Olympics. I was exhausted: I wanted to go home. I wondered if I had made a mistake. Had I let enough time go by to be out in the world? Could I last one more day to reach the comfort of my husband and my home?
The following morning seemed to go off without a hitch; no second edition Litchfield incident seemed to be in my forecast. Jeanne was scheduled to fly out of O’Hare airport later in the afternoon, and Micki and I headed to Midway. Although Jeanne and Micki had their boarding passes, I did not: Public Charters out of Manistee was small, and I had to wait to get my pass from their check-in booth. Micki and I arrived around 12:30. She was ready to head to security. Public Charters did not open until 4:00, so I had no way to go through security without a boarding pass, and the section of the airport I was stuck in had few chairs, lots of screaming children, an over-priced snack bar, and restrooms tucked in corners. I panicked. What if I had a problem? What if I couldn’t figure out how to get through security without becoming confused?
In “Modern Friendships,” an essay by author Phillip Lopate, he suggests that “Friendship is a school for character, allowing us the chance to study in great detail and over time temperaments very different from our own.” Learning to understand my frailties over the past year, and even longer as the brain tumor wedged its way into my psyche, I realized I needed to confess my concerns to Micki: I was scared.
Micki walked me over to the escalator and we rode downstairs to a large area filled with people on our right headed to the baggage claim area and people on the left joining the long line of folks waiting to go through security. Carefully, she explained to me just what I needed to do.
We returned to the upper area, where Micki spent time talking to me before it was time for her to go through security and head to her concourse. She reminded me of what I needed to do when I finally got my boarding pass. As she walked towards the escalator, I reminded myself that I used to be the confident one, and the friend anyone could count on to help through a difficult time. Wasn’t that part of me still there? Had the brain tumor eliminated what I considered my best attributes?
I finally secured a seat to wait for my airline to open its booth, and two small boys ran up and sat next to me. Their teenage sister sat down on the other side of them: Our foursome was complete. The children played games; I pretended to read my newspaper.
Once again, in my lucky life, things fell into place. Public Charters opened at three—an hour earlier than predicted. The man and woman behind the counter asked me if I would like to check my bag even though it was a carry-on. I sent it on its way. All I carried now was my small over-the-shoulder bag. I had three hours until my flight.
When I arrived at security, I noticed a sign for an “Express” lane. I asked the woman there if I was a candidate for “Express.” She smiled, said yes, and sent me down the hallway past all of the people standing in line. As I rounded the corner, another woman waved me through. I placed my bag and shoes in a bin, sent everything through the x-ray machine, was waved through the metal detector, and made my way to my concourse.
As I approached my boarding area, I heard a voice call my name: Micki was waiting in the concourse. We had a short conversation and another passenger joined in as we discussed the boarding process.
Later, after Micki boarded her plane and took off for Denver, it was finally time for me to board my flight to Manistee. The pilots flew near the magnificent downtown Chicago area as we headed north and eventually east. We entered a bank of clouds at one point, but soon the clouds disappeared, and I looked out my window and saw Lake Michigan below me. A freighter cut a smooth path across the water, and I realized that I, too, was part of something moving forwards, and what I left behind would be memories in the wake of kindness bestowed on me by friends and shared stories with people from my past.
Lopate, Phillip. Getting Personal. New York: Basic Books, 2003. Print.
“Everyday Is A Winding Road” by Sheryl Crow, Brian MacLeod, and Jeff Trott
“Get Your Kicks on Route 66” by Bob Troup, 1946.