Written By: Michael Fredrick Geisser
I find that the bank has made a mistake on my credit card account. I know I didn’t purchase a case of bikini wax. I emit a sigh of resignation, call the number on the back of the card and go through their keypad menu.
While waiting for a customer service representative, I practice saying my name and the words, yes and no. After approximately ten minutes, a man’s voice comes on the line. My heart begins to race and my breaths come faster and shallower.
The man says, “Thank you for calling. Can I please have your first and last name?”
I take a deep breath, prepare to say, Michael Geisser. “Mighel . . . uh, uh, uh . . . Mighel Gessa,” I say, straining to speak each syllable clearly with a mouth that feels like it’s full of cotton.
“I’m sorry,” the voice says. “Can you spell that for me?”
I take another deep breath. “Um, um, um . . . Em-I-she-ach . . . um, um, um, um . . . Em-I-she-ach -ah-eh-el . . . um, um, um . . . ghe-eh-aye-esh-esh-er-arh.”
“I’m sorry,” he says. “We must have a bad connection. Can you call back?”
I want to yell, Wait! —but the line goes dead before I can make a sound.
I begin to throw the handset against the wall with a vicious swing of my arm. I catch myself before it leaves my hand, and gently place the receiver into its cradle. I drop my head into my hands and tightly close my eyes to block out the world.
Anna, my wife of two years, and I are sitting in a Spartan exam room, alone. I smell soap and bleach with a sickly hint of bodily fluids. The clock ticks loudly. And slowly. We are waiting for the neurologist to come and interpret my test results. My mouth is dry. Anna’s hand feels warm. I hear his footsteps approaching. Leather soles clack sharply against the linoleum floor. He is moving fast. Does the sharpness of his step mean he has a sure diagnosis for my symptoms? Does his speed mean he can’t wait to tell me good news? Or that he wants to get an odious task over quickly?
The door glides open without a sound and the doctor enters. He’s tall and thin with a gaunt face that seems to be apologizing for its look. His white coat is starched and clean. He smells like stale coffee.
He shakes our hands with his limp, moist mitt, while avoiding all but the most cursory eye contact. “Sorry if I’m a little late,” he says. His voice sounds underpowered and regretful. He eases into a metal frame chair across from us and crosses his legs, folds his arms across his chest, says, “How are you doing, Mr. Geisser? Any falls recently?”
“Uh, no,” I say, wondering why he asked.
He looks at Anna. She shakes her head.
“Good,” he says. “Well, based on the test results, it seems like your knee-aches and stumbling are the result of motor neuron disease.”
My heart skips a beat. I look at Anna. She is a pediatrician and interprets medical jargon for me. Her face is white.
“Are you sure?” Anna asks.
“Yes, as sure as we can be about these things, as you know. But what we don’t know yet is the type. It could be primary lateral sclerosis, PLS, or it could be the first signs of ALS, amyotrophic lateral sclerosis. Only time will tell.”
The room is silent for a while. Anna’s hand feels cold. I shiver and my breaths get choppy.
The doctor continues, his focus on Anna, “As you probably know, if it’s PLS, it means a slow but progressive deterioration of the signals to the muscles, eventually leading to loss of the ability to speak and move the limbs, possibly a feeding tube and oxygen tank to help breathing in the late stages. If it’s ALS, the prognosis is for more rapid decline ending in death within two or three years, but as we don’t yet know if it’s ALS, we don’t have to go there now.”
I look at Anna. She continues to stare at the doctor. She squeezes my hand.
The doctor weakly shakes my hand as he stands, gazes vacantly into my eyes and says, “I’d like to see you in a month, Mr. Geisser.” He grabs Anna’s hand and looks at her bloodless face. His face is red. In a phlegm-choked voice, he says to her, “See the girl at the counter.” He rushes out of the room.
The fluorescent lights hum and flicker. I clear my throat several times while examining the thread hanging off the shoelace of my left my sneaker, trying but failing to avoid thinking about my fate. The silence becomes too much to bear. Anna grabs her purse and we leave.
“Well, at least we know now,” she says under her breath as we walk across the parking lot. It is hot and sticky out. I put on my sunglasses. I see an old chestnut tree heavy with green burs. I stop next to our car and pick one off the asphalt. I like the feeling of the nettles pricking my skin. Anna opens the car door and gets in the driver’s seat. I squeeze my hand around the bur and its points begin to penetrate deeper into my skin. I increase the pressure until I can no longer stand it. I toss the bur onto the lawn below the tree and get into the car.
Anna doesn’t start the car. “Are you okay?” she asks.
“I’m thirsty,” I reply. “Let’s stop for a drink on the way home.”
“I thought you said that job was locked up by someone else?” Anna asks as she digs into her Fra Diablo calamari.
“I had a meeting with the Mayor yesterday,” I say. “I convinced him that our firm is uniquely qualified to do his job.” I take a sip of the house red, think I may deserve a more expensive wine after this glass. “He was stubborn at first, but when I told him that I would be able to help him apply for funding from the State, he was mine.”
“You have a golden tongue,” Anna says.
We look at each other and chuckle.
“And I needed all of it to convince you to marry me.” I say. “I must’ve spent a fortune at fine restaurants to get you to abandon your gig as a single, well-to-do physician.” I reach across the table and take her hand. “Remember how you struggled with the prospect of being a mother to Lauren and Nicole?”
“I wouldn’t change a thing,” Anna says through watery eyes.
I look at her and think about how she hadn’t bargained for my infirmity when we took our vows in 2001. How she now has to carry the groceries from the car, run to answer the door when someone rings our bell, fetch the mail every day from the bottom of the hill we live on. I think about how I schemed my way into her heart with clever retorts and wordplay: called her Miss Rutabaga, Swee’ Pea, and other pet names. Told her I was a certified Excitement Engineer, could have fun in a paper bag. Wrote silly poems and read them to her while we sipped Malbec by the fire. Words—my weapons of conquest. I was armed and dangerous when we wed.
I finger the lump in my abdomen. A pump was implanted there a year ago to feed a muscle relaxant into my spinal cord. A shudder ripples through me from the undercurrent of fear that I hold from being hostage to the pump—if it fails I’ll know by the onset of severe itching over my entire body. From then, I have four hours to get the pump repaired or my leg muscles will cramp and die as I writhe in agony. Anna knows this, but I hide these worries from other family members and friends. I don’t want them to know how vulnerable I am.
As we drive home from the restaurant, Anna says, “Your speech is slowing down, Michael.” Her voice betrays a hint of tension; she knows I will argue that she is wrong, accuse her of jumping to conclusions based on skimpy data. This is my wont when she brings up something about the effects of PLS on my body.
I don’t reply. My mind races. Is she seeing something organic or is my voice just tired from a long week? Is this the beginning of me becoming mute? Will my arms and hands be next? Is my PLS morphing into ALS? This possibility has always terrified me; I begin to sweat and open the car window for some air.
“Are you okay?” Anna asks.
“Why do you say my voice is slowing down?” I snip.
“It is, but just a little,” she says. “I first noticed it last week when we were at dinner with the Griffins. Your joke about the couple being stopped by the police on the way home from a party didn’t have the comic timing you usually have. When you delivered the punch line, your voice stumbled at some key words. And tonight, you had trouble getting out a clever reply to the maître d’s comment on your tie.”
“You’re dreaming,” I say, even though I know that Anna is expert at seeing the slightest physical change in me. I want to say more, but this conversation is moving toward what I don’t want to acknowledge: I’m contending with more than mobility issues.
Two weeks later, I’m at a party for my daughter’s twenty-fifth birthday. The time comes where it is apropos for me to toast her.
“I wan’ to than’ . . . um . . . all of you fo’ joi- . . . “ I want to say joining us, but these words won’t come. “Um . . . I wan’ to than’ all of you for comin’ heh today.” My mind speeds – several strings of words toward a hilarious buildup present themselves, but my mouth won’t say them. “Um . . . today to celebrate Lauren birday. Here to Lauren.” I raise my glass. Inside, I am crushed. That is the best the man with the golden tongue can do? I pour myself another bourbon and walk outside to be alone with my thoughts.
I see the FedEx man coming up our walk. I open the door, take the package from his hand and want to say, Thanks. Have a nice day. Instead, I shout as if he is across the street, “Thanyo . . . um . . . Ni’ day?”
He looks at me strangely and says, “Yes, nice day.”
After he is gone, I am bereft: I spoke too loudly and made a question of, Nice day. Another chance for a warm interaction botched. My inability to engage in conversation is overwhelming me, driving me toward silence. Before long, when I hear my cue, I turn to a new habit: commencing an internal conversation to distill my contribution. It often goes like this: I’ll open with . . . not ready yet, still forming the words in my mouth. Maybe if I say it using these words it will be easier. No. Maybe these words would suffice. No, wait! Fuck! The conversation has moved on. If I speak, my words will be dismissed as irrelevant. I will be suspected of brain problems if I offer non-sequiturs to reestablish my place in the conversation. But, as the right moment recedes, I want more and more to say my piece. The pressure to participate in the conversation that is moving away from me builds up until I want to scream.
On the plus side, there are many times when my constant whittling of what I want to say leads to profound statements, like those expected from a wise man. PLS literature calls this The Genius Effect, a characteristic of some persons whose voices are compromised by motor neuron disease.
At a New Year’s Eve party, a friend who has just watched me take forever to cross the room using my walker, asks, “Do you have to think about every step you take, Michael?” When I nod my head in the affirmative, he says, “That must be a pain.”
I can tell from his voice that he wants to know more, so I think about my response for a few moments—I can see that everyone around us is waiting for my answer—and distill my reply over and over. Finally, I say, “I’ve got time.” Those around us erupt in laughter. I smile, think, Yes! I am still in the game!
I am driving from Heathrow Airport. Anna and I have come to visit our friends, Caroline and Peter, at their home in Bramley, England. Caroline has ALS and was given two years to live when she was diagnosed in 2008. Her disease has primarily affected that part of the brain responsible for working the muscles of the face and neck. Her most significant difficulties have been in eating and speaking. Varied courses are not unusual for motor neuron disease patients. Surprisingly, Caroline is still making her mark in the world. She is still able to fulfill her love of movement and exploration through Alpine skiing, cross-country biking and travel with Peter. Everyone who knows Caroline lauds her for her upbeat and indefatigable attitude, which seems to be keeping her death at bay.
It is late in the afternoon. The sun is coming through the trees; a staccato of sunbursts through the windshield unnerves me. I am unsure of why I feel so uncomfortable. Jet lag? Caroline’s last email revealed that her legs were weakening. Her track is not mine; I haven’t been diagnosed with ALS. But . . . she is so vital, so alive. Soon to be dead? If she goes, am I next? I focus on driving on the wrong side of the road to get relief from my thoughts.
Thankfully, my legs haven’t yet deteriorated to where I can’t get behind the wheel. The speed and freedom of motoring are a relief after being anchored to a walker and cane. But I have to avoid tense situations on the road. Otherwise, my legs cramp and seize up—not good conditions for a driver.
We arrive at Caroline and Peter’s home; gothic letters on a little yard sign proclaim Glenmore. Moss is growing in small clumps on the reddish-black brick walls of their cottage, and a thick blanket of green covers the roof tiles. I imagine their home as being devoured by parasites, like the ones that are eating away at the myelin sheaths that cover Caroline’s and my nerves. I try unsuccessfully to escape this thought by losing myself in the blue, globe thistles by their door.
“If you don’ min’, I nee’ a minute,” I say to Anna as I park in Peter and Caroline’s driveway. My heart is racing. “It’s been a tirin’ trip.” I want to find solace in Anna’s arms, but that would require me explaining what’s rattling me, and I don’t want to go through that work. I know she is watching me, as always, for signs of what I am thinking and feeling. She doesn’t know how terrified I am of seeing Caroline again.
Caroline and I have developed an intimate relationship via email over the past two years, and I know how much her condition has progressed in that period: she now takes nourishment through a feeding tube, can no longer speak, and her legs and arms have begun to weaken. Caroline has always avoided talking about her death, but fear has been showing in her messages lately.
Peter answers the doorbell, which has a button in the shape of a heart. When I see this symbol of love, I wonder how their relationship has fared under the onslaught of her disease. Do they make love anymore? Or laugh together when their Siamese cat, Sam, performs some silly trick? Do light moments like that turn into violent coughing episodes when Caroline aspirates saliva as her chest heaves too freely in passion or delight?
Peter is effusive in his welcome. I wonder if he will smile for the entire week we are visiting, or reveal some of his demons. I hunger for real emotions now. And although I cringe when they get too close to my truth, I no longer have the time or energy for plastic smiles and small talk.
Anna comes into our guest bedroom carrying a heavy bag in each hand. I reach out to help her and stumble over my own feet, crash to the floor. She drops the bags and helps me up. “Anything broken?” she asks.
“No,” I bark. I turn away from her and hope she leaves soon. I don’t want her to see me massage my left knee, which I’m sure is badly bruised. I wonder, if our roles were reversed, would my love for her change after doing all the work? Of course, I conclude, and love her more each day that I watch her struggle. My mood stays dark when I realize that the proof would only be in the doing, which is impossible.
I use my walker to navigate the hallway toward where Peter is making gin and tonics. I hear a door open at the top of the stairs. I stop and look up. Caroline’s and my eyes meet. I am reluctant to hold her gaze—I don’t want her to think I am staring; I have come to loathe the stares of others—but her blue eyes beg mine to stay with hers. She gives me a weak smile and I notice that her cheeks don’t rise; her face looks wooden. After a moment of frozen silence between us, she sidesteps down the stairs, dragging a loose right leg behind her. She gives me a warm hug. I am surprised at how unsteady she has become in the two years since we were last together. How light she is, how bony. I break from our hug and want to ask her about her legs. I can’t do it. I mask my morbid thoughts and tell her she looks lovely. For a moment, I hope that she will say something, anything, to show me she still has some voice. She remains silent except for some faint grunts and gurgles, but her eyes convey her joy at seeing me.
When dinner is done and the table cleared, Caroline tugs me aside by my shirtsleeve. Let me show you speech app on iPad, her machine says in a female, British voice.
“Kay, bu’ memba,” I say slowly to make my words intelligible, “I can’t carry a’ iPad round in my hand’.” I stop to rest my tongue for a moment. “I nee’ ‘em to stay vertica’ with m’ cane, or to push m’ walka.”
Tap, tap, tap, tap. Her spindly fingers work hard to continue our conversation. No excuses, her iPad says. She shows me how she can save anything she types and store it for easy retrieval: a phrase or word, or even a whole speech. She demonstrates how the app can also convert typed words into speech, in either sex, and with a long list of accents.
I say, “Nice,” and rest my voice for a second. “But as I say, it’s har’ for me to carry a’ iPad aroun’.” I stop to gather energy to speak. “It’s too early for me to thin’ abou’ this. My voice isn’t that ba’ yet.” I realize that I have just lied and wish I could take my words back.
Caroline punches a few keys and the machine speaks: Bullshit.
I laugh and suggest that I will look into the app when I return to the States. I am anxious to move on to a different subject. Caroline begins to type furiously. If not ready for app, bank voice.
I ask her, “Wha’ tha’?” I had hoped to avoid discussion of my medical issues with her in front of others; I felt that would be too painful, but deep down I know that it is another reason to avoid dealing with my issues.
Caroline types and the iPad says, You speak into recorder so app can learn to sound like you. Although I have no inclination to speak into a recorder, I tell her that I like the idea and say that I will bank my voice as soon as I get back to the States.
Our week with Caroline and Peter ends without any further big insights or regrets on my part. But each time Caroline types on her iPad, I wonder if I will ever be reduced to communicating like this. Will I be able to exercise my “golden tongue” through a machine?
My voice has degraded to where I avoid all but crucial speech. I contemplate Caroline’s app-generated words, You must bank your voice.
After several months of procrastination, I go to Radio Shack. When the clerk asks me, “Can I help you?” I want to tell him that I need to bank my voice for the future, when I might not be able to speak at all. I need the least expensive machine that will do that for me.
I take a deep breath and grunt, “No than’.” The clerk backs away as if I scolded him for approaching me. After a prolonged search, I find what I want. At the register, I want to apologize but don’t. The effort would be substantial, and I am loathe to hear, Excuse me. I didn’t understand you.
I put the recorder into a rarely used, lower drawer of my desk, so that Anna won’t see it. I’m not sure if I’m going to carry through on banking my voice, and I want to avoid the effort of responding to her questions.
I decide to write a speech and read it into the recorder. Over the next ten days, I type a brief manifesto on the joys of life and, when Anna is out of the house, work on enunciating each word and phrase. Over and over. When I feel that my words will be intelligible, I pull the recorder from my desk drawer and put it on the desktop next to my laptop. After reading the instructions, I install two AA batteries.
I press the record button and say, “Tes’, tes’, tes’.” I replay these three words and my face drops. I sit back and look at the ceiling, despondent. I work on pronunciation of the word test. After three tries, I am convinced that my voice is intelligible, albeit with a change in pitch (higher), volume (louder), and pace (slower). I shut off the recorder and put it in my desk drawer.
After a few days, I conclude that delivering a formal speech would be narcissistic and contrived.
Shortly after abandoning my grand speech idea, I resolve to speak extemporaneously about my innermost thoughts and values for my family and heirs.
Soon thereafter, I pull the machine out of the drawer and put it next to my laptop. I continue working and frequently find myself looking at the recorder. After an hour of glances that are accompanied by aggravating losses of concentration, I press Record and prepare to speak. My routine begins: as my mind composes what I wanted to say, my brain pulls the words back as too complicated for my mouth to handle. Another cycle, and another, as I whittle my words to their essence. Have I fully incorporated the process of The Genius Effect? I clear my throat, “I love you, Anna. I love you, Lauren. I love you, Nicole.” I am surprised that what I said is so short. But it is everything that I want to say. I shut off the recorder, put it back in my desk, and move into the den to read. My inner turmoil quieter than it has been in years.
My digital voice recorder sits in the desk. It’s in the bottom drawer on the right, under replacement printer cartridges, extra electronic cables, and old CDs. I cringe—like I have a hundred times since I spoke into that machine—when I think about pushing Play.
The phone rings at home. It is night. I pick the handset off its cradle and look at the display. It’s my gym calling. I hand the phone to Anna. I mute the television show we are watching, The Deadliest Catch, about crab fishing in the Bering Sea. Anna is mesmerized by anything to do with the oceans. I watch it to be with her.
Anna takes the phone, gives me an exasperated look that says, They want to talk to you! She speaks with the person on the other end, puts her hand over the mouthpiece. “They’re asking if you want to renew.”
“No,” I reply, wanting to add that the gym manager is comping me my membership from now on. He knows how physically compromised I am and wants to show his appreciation for my many years of loyal membership.
After Anna hangs up, she says, “They’re having a sale on renewals: 50% off if you prepay a whole year.”
I want to tell her about the comping. I say loudly, “I kno’.” I inhale deeply. “Bu’ . . . uh . . . bu’ . . . um . . . dey ah comin’ me dis time.”
“One more time,” Anna says with a hint of exasperation.
I wave my hand in resignation, see the despair on her face. I clear my throat and reactivate the sound on the television. We watch the remainder of the show without saying another word, holding hands.
Michael Fredrick Geisser
Michael Fredrick Geisser writes in Warren, Rhode Island, in the tiny enclave of Touisset that overlooks the Kickemuit River. He lives there with his wife, Anna, and their wonder Westy, Kosmo.
Mr. Geisser writes non-fiction, fiction, and personal essays. His work has been published in Intima, Sliver of Stone, Monkeybicycle, the Journal of Microliterature, Flash Fiction Magazine, the Grub Street Daily, and the book, “Befriending Death: Over 100 Essays on Living and Dying.”