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Deadly Déjà vu

The pain was significant and seemed so innocent at first.

I reassured myself, “Who doesn’t get an occasional cramp?” The beginning symptoms did not raise any red flags. Oblivious to the warning signs, I spent many nights walking the hall trying to work out a Charlie-horse that struck during a peaceful sleep. The bad ones forced me to double over in pain as my insolent leg refused to support my weight. In time, these unwanted contractions spread into muscles I did not know I had.

My struggles not to ram the car in front of me often interrupted the endless bumper-to-bumper work commute. Writhing in pain, I arched up, rising clear off my seat to stretch my torso so an abdominal cramp would ease. Other times I resembled an opera star exercising my neck, mouth and facial muscles before a performance. My chin rose so high I had difficulty seeing the road when I stretched throat muscles conspiring to choke me. These must have been peculiar sights to the drivers traveling alongside my car. I can imagine what they were thinking as our eyes locked during the snail-paced drive. If it happened now in the era of ubiquitous cell phones, someone would call the police and report a DWI.

My odd mixture of symptoms pushed me to my family doctor.

“What brings you today,” he questioned.

“I have been getting these weird kind of cramps, Doctor.”

He probed deeper, “In one muscle or an area?”

“Well, I get them everywhere.” I told him. I went on with the specifics.

He wanted to know, “Has anything changed in your diet? Do you do anything new, like working out?”

“Nothing out of the ordinary,” I detailed my weekend warrior lifestyle of chopping wood, mixing cement, digging holes, shingling roofs and a myriad of other jobs over-ambitious homeowners tackle. He listened, put a stethoscope to my lungs, palpated my abdomen and drew blood. He tested my heart.

“Things look okay,” he announced. “Let’s get your lab work back and we’ll go from there. See me in two weeks.”

It turned out my EKG was good as was the other lab work. I had a slight elevation of sugar level. However, the weight scale told another tale. I had become middle-aged plump. The doctor reminded me I turned forty, was out of shape and held a sedentary job.

“How do you expect your body to respond to the abuse you inflict on it,” he asked. “You have to take better care of yourself.” He sent me home with orders to clean up my lifestyle: lose weight, exercise with more regularity, eat a healthier diet and get proper rest. To ease my transition to this healthier and with hope, cramp-free lifestyle he suggested, “Drink tonic water. It has quinine in it. Quinine will help the cramping.”

Like most, I had partial success with my lifestyle changes. Regardless of my efforts, the cramping continued. Seeking relief from the agonizing muscle spasms, I graduated from tonic water to over the counter quinine pills. There were no improvements and my gyrations became fodder for fun at family gatherings. Little did anyone suspect the disaster occurring just inches under my skin. The twitching was symptomatic of an impending nerve Armageddon. Unbeknownst to me, my nerves were fighting a losing battle, overwhelmed by a mysterious force. The twitches were their last ditch efforts to survive.

Several years later the tipping point came, pun intended. I began falling. Once it was over my son’s bicycle that I tried to step over. Another was during a lumberjack impersonation as I chain-sawed some trees on my property. As I tumbled off the log I was standing on, the buzzing blade brushed the leg of my jeans, shredding it. It nearly took my leg off. My symptoms were getting worse.

When I pointed out to my wife how my muscles twitched once, we stared in amazement. My skin dimpled and danced.

“It looks like leprechauns jumping on it, “she exclaimed.

It was a bizarre sight. Although not painful, it was difficult to watch the waves of chaotic movement ripple across my body parts. It was apparent, things were not normal, but I thought still benign.

Upon a return visit to my GP, he recommended a neurologist. When I went for that visit, he took a medical history. “I understand from your family doctor you are having fasciculations?” I nodded in agreement. “Let’s take a look at you.” With that, he raised his stethoscope.

He performed a physical exam. The twitching began, almost on demand. “Do you mind if I call my partner in to see this?” he said in a surprised tone.

He stepped out of the room. Rather than be alarmed, I was relieved my symptoms were of sufficient interest to warrant another view. They looked, pointed, nodded and hmmmmed.

Growing concerned at their reactions, I interrupted the viewing by asking, “Doctor, what was causing them?”

His voice replied with assurance, “There are many possibilities, in all likelihood something benign. Most of them are.” He scheduled a follow up visit to do an electromyogram or EMG.

I arrived at the office not knowing much about the test I was about to take. I was unfamiliar with the procedures. I assumed it was like an EKG. God was I wrong. He explained the test measures electrical impulses within the nerve.

“With it, I see the health of the nerve. First we’ll take some measurements.”

He stretched a tape measure down my forearm and made marks as guides. He looked like a tailor measuring my arm for a suit. At the end of his marks, he taped electrodes to register an electrical impulse. Next, he brought out the machine. It looked like a Hollywood prop from a Frankenstein movie: A gadget to reenergize the dead.

I opened my eyes wider when he took out needles that reminded me of what an acupuncturist may use. They were several inches long. He connected them to the machine with thin wires.

He stated. “I need to insert these into your muscle fibers.” Then, his Franken-machine would generate voltage to course down the nerve.

“Oh, I see,” was all I could muster as I sat with no protest, submitting to the procedure. The tingling, pulsing surge of electricity shot down my arm multiple times. It felt unusual, uncomfortable but not quite painful. It was more surprising than anything else was. I wondered how it would feel to be electrocuted, every muscle at one time? He did a few different muscles.

The test did not rattle me until he looked me in the eyes and instructed, “Stick out your tongue.”

With nonchalance, he grasped the tip of my tongue, pulled it out until it hurt. Holding it snug in tweezers, he skewered the center and back with several probes. Once he had them all in, he gave me the ridiculous order.

“Now relax,” he told me.

I smile now imagining all of the stuff dangling from my quivering tongue. Relax? I did my best to comply with his instructions to relax and keep my tongue still.

The test ended, thank goodness. He drew blood and prescribed an array of exotic tests done searching for immune disorders or another explanation. After the visit, I found myself wandering in the public library reference room thumbing through medical books to find out what he was looking for with the tests. The ailments I uncovered went from stark to grim. As I identified one after another. I realized I could be a very sick man.

Several weeks went by as I waited. I called a couple of times to monitor the status of the tests. I grew more concerned with each passing day. Columbus Day fell on October 13 and schools were off making a long weekend. Every other teacher was delighted. There was no joy in my home as I grew anxious awaiting some news. By afternoon, the cloudy autumn day turned cold and rainy.

The anticipated call came that day in the early evening. I bantered with the doctor as I summoned up my courage. I started, “So doctor, have any of my tests come back?”

“Yes, all of the tests came back negative.” For the moment, I was relieved. I pressed him for an explanation for my symptoms.

After a few evasive exchanges for my questions, he concluded, “You should come back in a couple of months and we can check you again,”

“Why is that?” I wanted to know what he was looking for and what would change in a couple of months. I continued seeking something specific.

“Well, your EMG shows some nerve degeneration,” he replied in a general, open way saying nothing.

“Nerve degeneration? Really? That doesn’t sound so good.” He mumbled something about different possibilities. He said he was not sure of the cause. I pushed him to answer the question, “What do you think is going on?”

His answer was a question. “Mr. Pendergast, have you ever heard of Lou Gehrig’s Disease?”

I did. I knew where he was going. After that, I don’t remember anything. I was numb from Lou Gehrig’s disease reverberating in my head like the sound of gunshot fired next to my ear. It ricocheted through my head. I hung up and broke down.

Struggling to breathe, I told my wife. Christine and I held each other close and our nestled faces moistened from each other’s tears. Life as we knew it was over. I was 44 years old. The rain struck the kitchen windows streaking downward to match the tears streaming down our faces.

Because of the research I had done, it wasn’t as if I was surprised. I shared with my wife before the call that my symptoms appeared to be ALS. The confirmation was still devastating.

My family was precious, my career noble: I had a good life, everything considered. I realized I was content. I wanted to continue for as long as possible doing almost the same thing. I stayed home a couple of days to let it all sink in. Thursday I returned to work, anxious to re-enter the world of normalcy.

Teaching was my therapy and I threw myself into it. My colleagues were told about my diagnosis before I came back. They surrounded me in a loving, protective cocoon. I was glad to be there doing what I loved.

One icy January afternoon in 1994, I escorted my students to the bus as usual. After they boarded, I returned to my classroom. On the walkway back, I failed to negotiate an ice patch and slipped. I fell hard, hitting my head, knocking me unconscious for a moment. I laid motionless sprawled out on the sidewalk. The children in the neighboring classrooms saw me. Their teacher called the office. I felt groggy when I attempted to stand, but could not. I looked up to see the angelic face of our school nurse, Maureen, dispatched to rescue me.

“Chris, stay there a minute until you feel strong. You took a bad fall. There is no blood, so nothing was cut.” She spoke as if I was a routine visitor to her school office. Maureen Conroy was a gentle soul with a warming smile and soft voice. Her personality suited her role as surrogate mother to the 500 children in her care.

Her calm manner helped me as well. Not much over five feet, many fifth graders towered above her. With some assistance from her, I arose. She struggled to steady me. I was in a daze and wobbled from side to side.

“You are cold Chris. I want to get you back inside your classroom. Don’t rush, Chris, take your time. Here, lean on my arm.”

We looked like the odd couple as my six-foot-plus frame leaned on her petite, five-foot body.

“Easy does it, Chris,” she warned as we went back. I walked on automatic pilot.

As the fog lifted, I realized I did not know who or where I was. The woman standing next to me holding my arm was a stranger. In a soothing manner, she said conversational things like the weather and the ice.

“It has been cold. There is ice everywhere. Kids are coming in all day long from falls.”

Maureen calmed me by talking. Once safe inside my room, she eased me into my chair and sat across from me. She answered the questions I peppered at her. My principal came to check on me. She assured both of us the bump was just temporary.

“He is ok. His memory will return in short order,” she said.

She was right. The presence of my principal alone helped jog my vague memories. He left after being satisfied I was okay. Maureen spent the better part of an hour coaxing me back to reality.

I began to remember details about my life, but something eluded recollection. I had a haunting and ill-defined premonition. I knew not all was well but I didn’t understand why. Somehow, I sensed Maureen was not disclosing everything. I held a menacing feeling that I could not shake.

I grew agitated for the first time since losing my memory. My paranoia was palpable as I raised my voice.

I quizzed her, “What are you holding back? Why won’t you tell me?” I grew mean and bordered on abusive. I was so agitated. “Maureen, something is missing. Please tell me!” I pleaded with her.

“Everything is okay, Chris, don’t be upset. Try to calm yourself.” Her eyes contradicted her words. There was something more.

I shouted, “You are not telling me the truth.” I stood up and demanded to know what she was holding back. My memory was shielding me from something terrible. I could see it in her face.

Maureen saw my dismay and she was not able to calm me down. She took my hand in hers and told me to sit down. Looking into my soul, she stroked my hand and began to speak.

“Chris, you don’t remember you are sick, do you?”

The words terrified me. Angry, I pulled away and stood up. I looked at her, “Just tell me what the hell is going on.”

Unable to avoid it any more, she blurted, “Chris, I am sorry, you have ALS.”

Stunned, every other question troubling me evaporated. “A L S?” I forced out the letters. She looked directly at me and nodded in affirmation. Her revelation was shocking and new. There was no memory of my diagnosis.

For the second time I heard, “You have ALS.”

I lowered my six-foot-two frame into the small student desk next to her as I tried to digest her words. They opened a floodgate of emotion once more. I reeled from the news. This time I understood the implication. In an instant, I went from a confused, agitated man to a heartbroken one. I hunched over in my seat, put my face in my hands closed my eyes and cried. She extended her arm and clasped my hand again.

In the darkness, I heard sobbing. Maureen cried with me. Her muffled sobs soothed my aching heart. I knew I was not alone.

Life is not fair or unfair. Life just is. Most people in middle age never have to hear the devastating news, “You have a terminal illness.” Others like me are not so lucky. It is a breath stealing, mind-altering experience. Readers who have experienced it comprehend what I mean. Those untouched by a harbinger of death cannot fathom it. They can only empathize.

I went through that rite of passage once. How could it ever happen again? A diagnosis of ALS is a statistical rarity. Yet, it did. Worse, the second time I received the news was as terrible as the first. The double diagnosis scenario has to be one for the record book.

Life is too short to spend wishing things were not so. Things are what they are. Some occurrences are not our choice. However, we do choose how to respond. We decide how to live the life we get.

I said my second diagnosis was simply, “A deadly déjà vu.”

The lesson I learned from this was the importance of empathy. One supportive person is all it takes to transition safely through a crisis. Each of us will be presented with an opportunity to support someone in crisis. I learned just how much value there is in taking that opportunity.