Clarapy: Clarity + therapy. During a phone conversation with my friend Darcy one day, one in which I was extremely stressed out, I tried to thank her for giving me clarity and free therapy. In a fortuitous slip of the tongue, I uttered “clarapy.” Since I have invented a new word, I guess I have to define it now that it is part of my daily lexicon. As Ray Charles, Humble Pie, and others have attested to in song, “I don’t need no doctor.” They insist they need their “baby,” but what I think they really needed was some clarapy.
Clarity: Lucidity. Understanding. Therapy: Treatment for some sort of disorder whether physical or mental. When I can’t figure out things for myself, I reach out to my friends. True friends. The kind of friends that put up with my crazy. In my case, they understand that there is a 100% chance I will swear, and they still answer my phone calls. I know, in turn, my friends will almost certainly need some clarapy from me during stressful events in their lives. I will listen for as long as they need to talk.
Since a falling out with one of my closest friends almost three years ago, I have been examining friendship relationships more than ever. I learned a lot from books about friendship and my own fractured friendship. True friendship involves a willingness to put up with each other’s junk. The crazy stuff. The “I-can’t-believe-you-did-that” moments. And, in turn, I must put up with their crazy. Clarapy is part of the deal.
In late January, my husband and I went to Florida. His mother was having some health issues, but under our care, she seemed to be improving. We went ahead with our previously made plans. I had agreed to power walk the Melbourne Music Half Marathon with my friend Pat. Despite the fact that I had zero training for a half-marathon, unless you count endless workouts on my elliptical trainer in Michigan, I agreed to give it a try. After all, I had run four half marathons in the past, so I figured I could pull off power walking one without any problem. After all, I had nine days in Florida to train before the race.
Around mile ten on race day, after Pat and I had maintained an under 14 minute-per-mile-pace for the entire race, I realized I had blisters the size of silver dollars on the bottoms of both feet. I also discovered that I had forgotten to put anti-chafing balm on my right arm. Where my arm had rubbed against my tank top, I had a blister/bruise the size of Lake Okeechobee. At mile twelve, Pat and I clocked a 13:29 mile. At the end of the race, I showed Pat my blisters and bruises while I gulped down pizza and beer. She asked why I had never complained during the race. I wondered about that for days and days afterwards while I nursed my sore body back to health. When my mother-in-law’s health suddenly took a dramatic turn and ended up in the hospital, I thought about this more and more.
After a particularly stressful day, I sat outside in the warm Florida sunshine as the sun began to set. A woman across the street rode her three-wheeled bicycle, circling a parking lot. Around and around she went as a small terrier rode in a white basket on the front of her bicycle. For some reason, I felt insanely jealous of this woman. I wanted her bicycle and her dog. What was wrong with me? Logically, I knew I wanted my mother-in-law to heal quickly. I wanted to ease my husband’s pain and stress. After watching me cope with my mother’s Alzheimer’s and my father’s dementia and cancer, a period of about six very stressful years, my husband understood all too clearly the crazy that comes with caring for an elderly parent. It can be the loneliest feeling in the world. I needed to be strong for him. How could I provide clarapy for my husband when all I wanted was to steal a woman’s bicycle and her dog?
Typically, a good run or a power walk works sufficiently for waking up those feel-good endorphins and prevents me from committing a crime. Despite the fact that the hot weather in Florida was the extreme opposite of Michigan’s frozen-lakes-in-winter syndrome with temperatures and wind chills in the negative thirties, I was miserable, but I wasn’t sure what would untangle the threads of craziness circling through my amygdala. I gave a little spin on Pure Prairie League’s song “Amie,” and sang, “Amy G, what you wanna do?” The answer seemed obvious: clarapy. I sent out a few text messages, and that’s when my friends began to offer up their own special brands of medicine.
Phone calls. Emails. Cards. Friends driving across the state of Florida to hang out with us and search for manatees. Eventually, my mother-in-law was in a rehab facility, and we were invited up the coast to stay with friends for several days. We were still just a short car ride away from my mother-in-law. In addition, I had long phone conversations with several Michigan friends where I ranted and raved about all sorts of things, and my friends did not hang up. Instead, my friends provided insights from their own similar situations, words of wisdom, or simply found ways to make me laugh. My friends might not wear capes or have x-ray vision, but they certainly have the power to heal what’s ailing me when exercise isn’t enough.
How was I able to finish the half-marathon when my body hurt so much? I could have stopped, slowed down, or started whining (or swearing which would be much more likely), but I did not want to let Pat down, nor did I want to let myself down. I knew I could do it. “Mind over matter” as my mother used to say. I knew my body would heal later. Why is dealing with a sick parent or child much more difficult? Why do emotions overtake our heart strings and play us like an out-of-tune harpsichord? When my mother-in-law was in the hospital, a woman in the next room kept loudly moaning that she was sorry. She didn’t mean to be bad. She wanted help. I began reliving my mother’s Alzheimer’s disease and had to spend time in the chapel just to get my game face on for my husband and mother-in-law. I began to rely more and more on my friends’ gifts of clarapy.
And it is true. Friends are gifts to us. Over the past few years, I have been lucky enough to spend more time with my friends and my cousins. I have learned so much from them every moment we have been together. Many of them have seen me at my absolute worst: the death of my daughter, my mother’s illness, my brain tumor, the death of my dog, and the last few horrible months of my father’s life. These are the things that define me and have made me temporarily crazy.
After each sadness and heartbreak, the fogginess in my brain would begin to lift as my friends and cousins gave the gift of clarapy in their own ways. Those moments are stored in my memory so that I can pull them up at a moment’s notice as if I am opening the pages of an old picture book: Running in the Flint Hills with my cousin Sybil as an eagle soared overhead. After the death of my daughter, receiving almost daily phone calls or visits from my friend Vicki who listened to me talk. Or not. Hugging my friend Darcy at the end of my first road race after Gamma Knife surgery for my brain tumor. Receiving feedback on my writing from my friend Chris as I struggled with language and writing after the effects of radiation and medication. Watching manatees floating in warm waters with my husband and friends Peggy and John in Florida as we worried about my mother-in-law. Intentionally crossing the finish line in step with Pat at the end of a half marathon. The list goes on and on.
I am back in Michigan now running on the roads I find such comfort in. My mother-in-law continues to heal in our home. I try to make my husband laugh as often as possible. I have been working on my clarapy game with him and my friends. I will do everything in my power to give them what they need. It might be as simple as listening or running a race together. Perhaps sitting on a beach somewhere and watching the world go by in silence might be the order of the day. Or perhaps it will be in a way I have not yet imagined. I am ready. My blisters and bruises have healed for now. My heart strings are in tune. I am still thinking about the dog and the bicycle.
The morning’s gray sky dripped with humidity and the promise of rain. I could not wait for the rest of my day to get started. The members of the band I used to be in were coming to my house to play music. For several years, I had dreamed of the ReCremains reuniting and playing music on my lawn with Higgins Lake as the background. Mother Nature laughed at this plan. After 1.5 inches of rain fell, I stared at the large green sponge that used to be my lawn. This was no place for electrical equipment. We would have to rock in the basement instead.
One of my former students, Christi, arrived first. Bandmates Lori and Kirker arrived soon afterwards and began unloading equipment from their car. Their amps, guitars, cables, and percussion instruments were added into the mix of my guitars, amps, piano, and keyboard. After figuring out a plan for setting everything up, we warmed up our fingers and voices by playing a few songs. Our friends, Peggy and John, arrived to watch the band perform. We chatted in between songs and awaited the arrival of Mike, Bill, and their families. We needed our piano man and our bass player.
Even though I was among friends and at my own house, I had performance anxiety. I had not practiced with the band for over a year. When I retired from Saginaw Valley State University in 2010, and my husband and I moved to Higgins Lake in 2011, the commute to SVSU became problematic. When my SBT (Stupid Brain Tumor) tried to take over my life, I wasn’t even sure if I could play guitar again.
There is something to be said for both a runner’s high and the way one’s brain works on music. When I was recovering from brain surgery, I soon realized that I always felt better when I ran every day and listened to music. I finally attempted to play guitar. Again. I started writing songs. Again. I read and reread books such as This is Your Brain on Music by Daniel J. Levitin and Musicophilia by Oliver Sacks. I soon discovered that although I could not remember things that happened six months prior, I could remember the words to practically any song I had ever heard whether it was Sinatra or Stevie Ray Vaughan. Music was the fix I needed; it was stronger than any medicine could ever possibly be.
After everyone else arrived, plus our neighbors from next door and my mother-in-law, Mike sat down at the piano, Bill fired up his bass guitar, and we began to play. I wished for our former drummer Frank, but he now lives in Virginia. I don’t remember what song we played first, but between songs, I spoke into my microphone: “I am so happy.” I repeated this many times throughout the afternoon and evening.
We ran through a bunch of our original songs, and when we played “Radio,” a song I had written years ago for the band, my fingers flew across my guitar, and my voice felt strong. We continued playing original songs we had written over the years: “Monkey Groove,” “Cream City,” “Carnival Clown,” “Swamp in My Heart,” “A Happenin’ Place (If You Happen To Be Dead),” “Highway Michigan,” “Lather, Rinse, and Repeat,” and so on. Occasionally we sang a cover song by the Stones or the Beatles. Christi sang Blondie’s “Rip Her to Shreds.” At some point, Peggy picked up a cowbell and joined us as we made merry music. We played “Brown Eyed Girl” by Van Morrison for Peggy since she had requested it. We also received requests for an Elvis song, and Bill broke out some major bass moves while singing “Jailhouse Rock.” Bill’s granddaughter Alara requested “The Alphabet Song” and “Wheels on the Bus.” We gladly obliged. She sang along and danced. Similar to a runner’s high, playing music had kicked my mind into happiness overdrive.
Eventually we knew it was time to stop. We were all exhausted. Although we had taken a break to eat dinner, we had been playing music for close to four hours. Or was it longer? My legs felt as if they might break. My voice was hoarse from singing and yakking into the microphone between songs. My neighbor, Jessica, suggested stand-up comedy might be in my future. I may seriously consider that. Not!
When I went to bed that night, even though I was exhausted, it took a long time for me to fall asleep as I relived the night’s musical madness. The next morning, I went down to the basement and looked around. The room that had been alive with music and mayhem seemed different now. Better. I had rocked in this basement with friends.
When I still taught at SVSU, author Ken Follett came to campus one year. My husband and I were lucky enough to be invited to the meet-and-greet. Instead of talking about writing, we ended up having a short conversation about playing guitar. He said that playing in a band made him a much better player. I realized this was true. The more I played music with Mike, Frank, Bill, Kirker, and Lori, the better I wanted to be as a musician and a songwriter. When Brei and Danielle, two SVSU students at the time, sang with us for a short while, I wanted to be a better singer, although I knew my alto voice could never compete with their vibrant sopranos. Despite this, I began to feel more confident.
Although Mike still encourages me to play lead guitar licks during songs, I still freeze up the moment he motions towards me. I am happy playing rhythm guitar and singing. I know I am the worst musician in the band, but they put up with me. They also seem to like the crazy songs I write, and with guidance from members of the band, those songs have become better than when I penned them as I sat alone with my guitar.
I am already planning on next year’s event: August 2015, on the lawn, under the light of a bright full moon. I am thinking of songs we could cover: “Moondance,” “Werewolves of London,” and “Fly Me to the Moon.” But it is the ReCremains original songs that really highlight the heart and soul of this group of musicians. Our poetry. Our brains on music.
Running on the icy/snowy/slushy roads near my house recently, dodging the snow plow truck guy who most likely thinks I am ridiculous, I realized how dealing with my SBT (Stupid Brain Tumor) for the past two-plus years has affected every aspect of my life. The drama of the grand mal seizure during the Zombie Run in Traverse City, Michigan, in 2011, learning I had SBT, undergoing Gamma Knife surgery (radiation to blast the tumor), and dealing with memory problems, emotions (“Cry Me a River,” indeed), and language issues (*^#^*) seemed to be a story I was ready to shed or at least shred into little pieces. As I listened to Hall & Oates’ words on my iPod, “Where do you dare me to draw the line? / You’ve got the body, now you want my soul,” I thought, hey, whoa, “I can’t go for that.” I needed to rethink my running strategies, face my fears, and set goals for running another 5K, 10K, or half marathon and not worry about waking up surrounded by Zombies at the side of the road. Time for a new game plan.
My one-year MRI in November 2012 showed that the tumor had shrunk a bit, but the edema was nasty and creating balance issues. My two-year MRI in November 2013 showed that SBT had shrunk a teeny bit more and the edema had “markedly decreased” since 2012. Since I had been feeling much better, I convinced my new neurosurgeon, Dr. Ma, to cut back on my anti-seizure medication since the dosage seemed to keep me in a perpetually stoned state and not in a good way. He scheduled me for an EEG, and on January 2nd, my son dropped me off at the hospital for my date with Angie and her electrodes. I sat in a very comfy lazy boy chair, feet up, blanket on, and waited while Angie dressed me up like some modern day Medusa, and she promised that the gel she used to stick the electrodes on my head would wash out easily. Two days later, I still felt like Cameron Diaz’s character in Something about Mary.
After a long series of tests to determine if I would have a seizure or perhaps slip into an alternate universe, Angie said she could see exactly where the radiation had zapped my head. Of course, I would have to wait for Dr. Ma to explain it all to me. I wondered if my brainwaves took a little detour around SBT as they guided me through my daily tasks. Was there still a possibility that I could have a seizure while running or watching NCIS? I anxiously awaited the results of my EEG.
My husband and I settled into the examination room and waited for Dr. Ma. Before long, he walked in wearing a very sharp suit. He informed me that I had passed all of my tests. The EEG did show electrical activities in the left frontal area of my brain that indicated the slight possibility of a seizure. Because of this, I would have to stay on my anti-seizure medication. He agreed to reduce the dosage even more than he had at our last meeting, so I felt this was a huge victory.
I asked Dr. Ma how those brainwaves work around the area where SBT is located and where the radiation burned a bit of a hole in my head, so to speak. Imagine a heart rate monitor where the blips of lines go up and down on a regular basis if your heart is in good shape. I had certainly seen enough of these as I dealt with my late father’s issues through the years of hanging out in the ER with him. Dr. Ma said that the EEG showed a distinctly different pattern when the brainwaves churned through the “damaged” zone. He then said something that made me want to stand up and cheer: “Live life. You can’t go back.” I can go for that.
I’m feeling lucky, and I am ready to get my running game on and get this body into a much sleeker shape. More miles and less beer ought to take care of that. SBT might be in charge of what my body can or cannot do, but I refuse to let it take my soul. As long as I can move this body forward, I am heading out the door into the unknown.
If a runner falls in the road and no one is around to hear her, does she make a sound? Does swearing count as sound? Ear porn for anyone listening? Recently, as I cruised along at my slow ten-minute-per-mile pace, I tripped on road debris and fell hard. I have a photograph of my right knee to prove it. My left hamstring and adjoining gluteus maximus are now speaking in tongues every time I sit down, stand up, squat, or stretch. I am tired of straddling the white throne as if it is a temperamental old horse just so I can do my business. Despite the ugly knee, the pain in the butt (and elsewhere), all I can think about is running, which is obviously something I should not do until I heal. I am a very impatient person.
I was out for a short 3.5 miler, and I needed to work off my massively sore car butt. After five days on the road that included stops in Peoria, Illinois, to visit my uncle in the hospital, stopping in Olathe, Kansas, to visit friends, and continuing on to Eureka, Kansas, to visit another uncle before turning the old car around and heading for home, I needed to stretch my legs and clear my head. The only real exercise I had within that time frame was a walk in Kansas with my friend Gretchen where the wind blew so hard that I wondered if we might actually be blown into Missouri.
Back home, I headed out on one of my usual routes around Higgins Lake. Sunny skies, 20 degree temps, and my “Summer Run” playlist on my iPod® provided me a sense of calm and relief. I glanced to my right towards a hill I had run up during the summer, but decided I needed to get my hill-legs back before tackling it again. As my head swiveled back towards the road, my left pink running shoe found a groove in the rough pavement and stuck. My upper body propelled itself forwards. My left hamstring pulled itself into an unnatural braking system that failed miserably. My upper body kept going. My arms became turbine-like, speeding up as if an out-of-control windmill. I was “Freefalling” as Tom Petty famously sings, but my landing would not be similar to the one depicted by the skateboarder in the music video. I reached out with my gloved hands and fell onto my right knee before the rest of my body slammed into the road.
November at Higgins Lake is a quiet and peaceful time. Spring, summer, and fall vacationers are nowhere to be found. Locals are at work or inside their homes keeping snug by the fire. Ducks outnumber people. Deer, always facing you with that startled look, turn and run back into the woods upon your approach, but turkeys give you the evil eye before forcing you to turn and run into the woods. On this day, the only witness to my folly was a pileated woodpecker who continued to amuse himself about thirty feet up in a dead birch tree. I yanked out my ear buds, and I listened to him laugh at me.
I sat on the pavement for a few minutes wondering if I could even get up. I was mad. There were no cars on the road in either direction. I finally figured out that if I rolled towards my left side, I could perhaps pull myself up. This painful move involved a lot more swearing. I noticed that my favorite running pants were torn where my knee had hit the asphalt. My gloves had tiny bits of gravel buried in them. I reached for my cell phone in my Armpocket® and thought about calling my husband to rescue me. I realized I was only a mile from home. Damn it! I would walk if it killed me. I tapped the icon for MapMyRun® and switched the app from running to walking. I did not want to miss out on the rest of my workout.
I started hobbling along the road, and about an eighth of a mile from where I had tripped the light fantastic, or something like that, a man walked out of his driveway and headed down the road away from me. I eventually caught up with him. He looked surprised as I passed him. “You came up fast,” he said. Was he being ironic? Sarcastic? An asshole? Or was he just some old guy who had not seen my tumbling routine in the middle of the road. I wondered if it was too early for a beer.
After an excruciating mile of limping home, I opened the door and walked into my house. I must have looked worse than I felt. As my husband looked at me, the concern on his face obvious, I said, “I’m hurt,” as I pointed at my ass. I then pulled up my torn pant leg to discover I was bleeding. I had wondered why my knee felt so warm. As I pulled the torn material off of my injured knee, I felt the material rip the skin off of my leg. I almost passed out, as I began swearing in an even louder voice than I had used on the road. After counting the imaginary stars in the ceiling, I grabbed my cell phone, turned off my mileage app, poked the camera app, and snapped a selfie of my knee. It was time to update my Facebook status.
I walked around for a while and tried to avoid the inevitable: I knew I was going to have to clean my bloody knee. I stripped down and entered the shower. Later, Jim said he could hear me in the other room as I swore and moaned when the water hit the wound. I managed to clean out the gunk, apply an antibiotic ointment, and wrap it all in some pretty gauze. Something oozed through the gauze in a pale-ale color. Even though it was twenty degrees outside, I put on a pair of shorts. I could not find a chair to sit in that my ass didn’t hurt and my hamstring didn’t screech like some sad violinist on Quaaludes. Freefalling…not.
Two days later, I told the nurse I was a bit sore as I climbed up onto the bed that would soon be slid into the open MRI for my two-year checkup. It was hard to believe that it had been two years since my Grand Mal Seizure during a road race and a freefall I have no memory of. I do remember surreal voices whispering “brain tumor” as friends and family circled my hospital bed. Weeks later, I had Gamma Knife surgery and imagined the radiation killing off the ugly thing that affects language, memory, and emotion. Months passed. My dog died. My father died. Other people I knew and cared about died, and I began to feel caught inside a spiral of death and despair, and yet my family and friends were there to catch me, forcing me to stand up, to get over myself. Deal with it. I began freefalling into a world of unconditional love and support. Faith. Mercy.
One week after my two-year MRI, I watched a bald eagle soar high above me before it started its graceful and pure freefall towards the lake as it swooped down to catch a fish. I ran inside to grab my camera. The eagle was too fast for me, and I missed the shot of it flying almost straight towards me before veering off and landing softly on a branch of a barren maple tree some two-hundred feet away. The eagle began the work of eating the fish. I watched through a kaleidoscope of trees, seemingly hundreds of arms and legs protecting the eagle from voyeurs or predators. After the freefall comes sustenance. Patience brings its greatest rewards.
And isn’t that what literature requires, really, for the writer to feel like her life depends upon it?
I am not certain when I first realized I had a problem with language. Memories six months prior to my SBT (Stupid Brain Tumor) seem to come and go, and some memories are nonexistent. If not for stories from my friends and family, and the writings in my journal, some so strange they fail to make sense, it seems as if I ceased to exist in mind and spirit while my body lay in wait for embalming. I felt as I was a stranger in a new country, and the language barrier made me invisible.
Instead of displaying the gift of gab that my mother would accuse me off having when I was young, I began hesitating over each word, fearing some dreadful malapropism or simply using the wrong word (like dock) when I was actually describing the hoist. I had to walk on the dock to get to the hoist which held the boat, but for some reason, my brain now found ways to avoid the logical sequence of events or find the correct word. As the Beatles famously sang, “Say the word and you’ll be free.” Well, damn, I wanted to be free, and I felt as if my life depended on it. I began to retreat more and more into my home office, lie down on the couch, and watch television. I became hooked on NCIS and the character Ziva David.
Ziva David’s character, played by actress Cote de Pablo, is a former Israeli Mossad agent who becomes an NCIS Special Agent. Ziva’s malapropisms, called “Ziva-isms,” are well known to NCIS viewers. As Ziva adapts to American culture and its plethora of analogies, idioms, and slang, she also shows her fellow agents that she doesn’t take crap from anyone. As I became addicted to NCIS marathon days, watching five or six shows in a row, I felt as if someone was “jerking my brain” (chain) as Ziva said in one episode. The NCIS family became my family, and I gave up reading books and writing.
Time passed and my frustration grew with my inability to comprehend anything more complex than People magazine. One day, as I stood in my office, staring at hundreds of my books, I noticed Laura Kasischke’s book of poetry, Space, in Chains, sitting on a shelf, by itself, as if waiting. I began rereading her poetry, and when I finished each poem, I sat still and listened to the quiet. I decided I was in language rehab.
Eventually, I began reading novels again, slowly, as if I was learning to ride a bicycle. I wondered if I had finally adjusted to my anti-seizure medication or if the radiation from my Gamma-Knife surgery had opened up a sliver of thought in my clogged head. One day I opened my writing journal, and instead of recording my thoughts for the day, I attempted to write a poem. It was horrible, but I sent it to my friend Chris Giroux. Chris and I became friends when I taught at SVSU, and we had been exchanging our writing for many years, providing feedback, ripping what needed ripped, or praising each other’s work when we got something right. I began spending less time watching NCIS and more time writing. I felt the jerk, jerk, jerk of my brain as it tried to move past language rehab and into the real world.
As luck would have it, around the same time, a former student of mine, Alie Buckley, contacted me on Facebook. She had started a blog, http://ifcoffeecouldtalk.wordpress.com/. Alie asked me how I was, so I told her about SBT. She encouraged me to start a blog and share my story. Alie became my teacher, showed me how to start a blog, and offered to read my posts before publication and give feedback. Again, I felt the jerk, jerk, jerk of my brain, and started to write for a different purpose: I wanted to tell my story. Perhaps if I wrote it, I would understand it.
I published my first blog post on June 14, 2012, and the process has been cathartic, therapeutic, made me laugh as I write, and made me cry far more than I ever imagined it would. I realize I am writing now because my life depends on it.
I am still addicted to NCIS and spend the occasional afternoon on the couch watching reruns when my headaches or balance issues sideline me. I believe I am making progress in this battle against SBT, and I am hoping language rehab will soon be a thing of the past. But as I have learned, friends and family provide the constant source of strength I need in my life, whether or not I am in language rehab. So if you see me out somewhere, and we strike up a conversation, and I pause for a moment, wait. My words are forthcoming: They are on the slip of my tongue.
*Schulman, Helen. “First In Her Class.” The Friend Who Got Away. Eds. Jenny Offill and Elissa Schappell. New York: Broadway, 2005. Digital Print.
Move it on Over
I will admit it: I’m obsessed with my brain. Here is a snapshot of my brain on November 16, 2011. Pretend you are facing me. There is a golf ball on the left side of my head. It does not belong there. I was not on a golf course when someone accidentally hooked a tee shot, watched it take a Happy Gilmore bounce, split my head open, and lodge in my left temporal area. The meningioma has been growing inside my head, rather taking up residency without my approval or a background check. I should charge it rent, but if I do, it requires a name and a checking account. Actually cold hard cash will do.
My SBT (Stupid Brain Tumor), though it resembles a golf ball, is more like a bad dog that follows me everywhere, pissing on my new shoes, biting my ankles, and growling at the neighbors. My SBT reminds me of several songs in which a dog is the antagonist in the “story”: Iggy Pop and the Stooges’ “I Wanna Be Your Dog;” Johnny Cash singing about a “Dirty Old Egg-Suckin’ Dog; or Earl Flatt and Lester Scruggs singing “Salty Dog Blues.” Perhaps the most relevant song to my situation is by Hank Williams when he sings “Move It on Over”:
Yeah, listen to me, dog, before you start to whine.
That side’s yours and this side’s mine.
So move it on over, rock it on over.
Move over little dog, a big old dog is movin’ in.
On November 16, 2011, I had Gamma Knife surgery; 54-minutes of radiation was aimed at my head to slice and dice the SBT. In a few days, I will have an MRI to determine if little dog is moving out.
Regardless of the outcome of Thursday’s MRI and the subsequent report, I will never be the way I was before. I see that as a good thing. For one thing, my dreams are better, more vivid, but it could be from the anti-seizure medication I am on. When I wake up in the morning, I think about my friends and family and how lucky I am. Then I move it (my body) on over to the edge of the bed, put my feet down on the floor, get up slowly, breathe in the day’s possibilities, and growl as I make my way towards the promise of a hot cup of tea. On Thursday, I will follow my morning routine as I take my moment in the MRI spotlight; and await the presence of big old dog as she rocks little dog right on out of the picture.
Couldn’t Stand The Weather
The cover of Stevie Ray Vaughan’s album Couldn’t Stand The Weather shows him playing his guitar as a tornado approaches him. Unlike Dorothy in The Wizard of Oz, Vaughan seems unconcerned with the approaching storm, seemingly playing through the twister as if his guitar will protect him from danger and potential death. Sadly, Vaughan was killed in a helicopter crash in 1990 at the age of 35. I was 35 at the time, Matt was 8, and Jim and I had celebrated our 12th wedding anniversary the day before Vaughan’s death. From the moment I first heard music by Vaughan, I was hooked. In 1988, his music became a talisman for my broken heart.
There were no signs of my brain tumor in 1988 when my daughter Nicole was born and died four days later. She died of anencephaly; her brain did not develop fully. A line in Vaughan’s song “Couldn’t Stand The Weather,” seemed to speak directly to my sorrow: “Like the train that stops at every station, we all deal with trials and tribulations.” Was this my trial in life? In 1988, the answer was yes, and despite watching my mother die of Alzheimer’s in 2008, and finding out I had a brain tumor in 2011, the answer to that question is still yes.
Parents expect to outlive their children. That’s a basic fact. Peggy, a very dear friend of mine, learned this cruel twist of fate when her son Johnny died on Easter Sunday, April 20, 2003, when he was twenty-three years old. Not a day goes by that our families don’t think about our children. I know many other parents whose children have died, the reasons vary, and when I hear someone ask how one gets over the loss of a child, I say: “You don’t get over it; you just learn to deal with it better.”
As I began researching information on meningiomas, I couldn’t help but think of the connection between my mother, my daughter, and myself. Even though my mother is not my biological mother, I started asking myself: What the hell happened to our brains?
Since Nicole lived for only four days, I can only imagine what she might have been. For my mother, I watched her slow decline into something unimaginable as she changed from the loving mother she was into someone who would not recognize me towards the end of her life. My mother the prankster and storyteller slipped into the land where memories and words no longer existed.
My father is now slipping into the land of dementia. Even though he lives in a nursing home not far from me in Michigan, his mind seems to have erased the past years where he and my mother lived in Michigan after moving here in 1992. He is convinced that people he knew in Dodge City are running the kitchen and working the night shift at the nursing home. Most of these people he refers to are dead. I pretend they are alive.
One night I dreamed that my mother called me and needed help. She said: “Your dad and I are in danger. Help us.” When I woke up, I told my husband about my dream, because it was so upsetting. I also wrote about the dream in my journal. Later that day when I visited my father at the nursing home, he said: “What does your mother think about me in the nursing home?” My father had not brought up my mother’s name since mid-April when he was still in the land of memory and remembering she was dead. My response to my father: “She is concerned about you.” As I walked out of the nursing home, the dream seemed like a snake crawling inside my skull, warning me of danger, but for whom? Was the dream purely for my father? For me? For the family?
In “Couldn’t Stand The Weather,” Vaughan sings “Ain’t so funny when things ain’t feelin’ right; daddy’s hand helps to see me through.” What would I be like without my father when he could no longer help me as if I were a child? At Nicole’s funeral, I remember leaning into my father, sobbing, holding me as if I were the child, not the almost thirty-three year old daughter. When my father learned I had a brain tumor, he was supportive, caring, and came to the hospital to watch my Gamma Knife surgery on a closed-circuit television. The memories of that seemed to have disappeared now, and he no longer asks me how I am. He’s more concerned about his checkbook and escaping the prison he thinks I have placed him in.
I have heard from quite a few friends of mine that they admire my positive spirit through my losses in life and dealing now with my brain tumor. What choice do I have? We all deal with things in life, and I am no different than anyone else. When my beloved dog died recently, I had a moment where the pity party in my brain began its full dance again, but, as typical for my blessed life, my family, my cousins, and some very dear friends did the one thing that seems to get overlooked in times of grief, of sadness: They listened to me.
If I look at the big picture, I have to say I am damn lucky. I have lived a life full of adventure, have a wonderful husband and son, have grown up with some wonderful cousins who are like sisters to me, and met wonderful people who became my friends. So whatever ride I am on now with my father and his fading away, and the brain tumor that radiation has hopefully begun its magical shrinking act, I’m facing the storm like Stevie Ray Vaughan did. I’m slinging my guitar like a talisman around my body, and playing my songs no matter what is headed my way.