The Telling

I don't remember the wheelchair ride to our car in the parking garage. Left and right turns were made, doors were opened and closed, and finally a blast of fresh air hit my red, swollen eyes. My best friend who had accompanied us was unusually quiet and I wished for a moment that she was her chatty self. I wanted normalcy and suddenly thought that I might never have it again. She and my husband discussed which roads would take us back to the highway. In my mind I was thinking "highway to hell" and the image of what I was to become played like a movie before my closed eyes. How could this be happening to me at 65 and just beginning to enjoy retirement. No answer would come. I was dealt a hand that couldn't be thrown away, and I would never know why.

It was early afternoon when we arrived home. My husband poured me a cup of coffee and I attempted to put things into perspective. Remembering my two previous surgeries I had to chuckle recalling how I put all my affairs in order for my husband just in case anything should go wrong. My children laughingly mocked me when I reminded them of the "metal box" where all my instructions and important documents were stored. My mom had done the same thing to me and we always made a joke of it. Once a month my mother would remind me where it was and how I was to handle her affairs. I did not want to hear it then and my children would not want to hear it now. It was ironic that now I would have to make the third and final list of instructions.

Later that day I knew the telephone calls had to be made. My children were waiting. I asked my husband to call and ask that they come over in the evening. My two sons were not available but my two daughters would come after dinner when their families were settled. Neither asked the reason for the visit and I knew they wouldn't. Although four years apart in age they were very close and could only reason it was not the best of news. They would need each other.

The girls arrived together as I knew they would. Jill, the eldest, carried a bottle of wine and Jen followed. Both had a slight smile but I could sense the tension in their voices. We opened the wine and everyone had a glass in front of them. My best friend arrived having recovered from the events of the day to give support. My dear husband could not bring himself to join and sat with our pets in the living room. I knew he was emotionally drained and couldn't handle the upcoming conversation. This had to be the most difficult moment of my life made more so because of my deep love for them. I finally blurted the words out in a faltering voice with tears streaming down my cheeks. For minutes silence reigned as they attempted, in vain, to stem their own tears. I only knew that I did not yet want to leave my wonderful, devoted daughters who were moms themselves. How in heaven could I leave them?

Everything having been discussed while drinking wine, the conversation, thank heavens, turned to other events in our lives, most of them comical. Laughter replaced tears and it was decided another bottle of wine was called for. Glasses were replenished and funny stories were told. My husband arrived home from walking the dogs and I'm sure thought we had all lost our minds. I was grateful for the levity that followed and thankful my daughters had inherited my sense of humor. It would become terribly important for them in the coming days, weeks, and months. Thank you, God, for the gift of laughter.

The evening ended with all of us, my friend included, laughing and hugging one another. It was done. My husband and I collapsed in one another's arms.

The Final Diagnosis

It was November 14th, eight months since the onset of symptoms. My husband and I set out with my dearest friend, Nancy, in the back seat for company and support. We would arrive with ample time to register and find our way to the Neuroscience Unit. Along the highway we counted ten fatally wounded deer and discussed their plight due to the continuous construction of home developments. Childhood memories of Bambi flitted through my head as we neared our destination. I registered and a kindly nun found a wheelchair upon seeing me rise from a chair with great difficulty. I had flashbacks of the sixteen years spent in classrooms with the good Sisters. Her radiant smile lifted my spirits.

After filling out the necessary forms we were led to an examination room. A nurse and a tall handsome resident appeared and introduced themselves. Granted it was a teaching hospital but where was the physician I had Googled the previous evening? The resident proceeded to perform neurological testing on my arms, hands, legs, and feet. It felt like a game of "Simon Says". He wore a pleasant expression and seemed pleased with my responses. I smiled back. The nurse and resident left the room leaving us to wonder what would happen next. Was this it? An examination by a resident?

In answer to my question a distinguished looking gentleman appeared and introduced himself. The head honcho had arrived at last. This was more like it. I eagerly anticipated a diagnosis with a treatment plan to follow. He sat down facing me and asked me to perform a few more tests on my extremities. Just to be sure I thought. These completed, another five minute intermission followed. My nerves felt raw as we again waited.

At last I heard voices in the hall which sounded cheerful but they faded as nurse, resident, and doctor reappeared at the door. Was the answer hidden in plain view on their faces? I was able to read the faces of thousands of students over the years. Why couldn't I read theirs?

The kindly and gentle doctor sat before me on a small stool while I smiled and looked into his eyes. Time stood still as he took my hands into his own firmly. I couldn't breathe. He took a deep breath and asked if I had ever heard of ALS. Yes, I nodded, and asked quietly why he wanted to know. A short and simple answer came forth from his lips. You have it. I'm sorry. You have every symptom of Lou Gehrig's Disease. I held his eyes for what seemed like an eternity, lowered my eyes and allowed the tears to stream down my face. I slowly bowed my head in acceptance.

My friend sat silent. My beloved husband, who was unaware of the hours I spent researching motor neuron disease, viewed this scene with confusion in his eyes. His face turned deathly white as I tearfully explained that I was going to die. I had been unwilling to share my fears and vowed to protect him at all costs until this final diagnosis. Now I would need his strength as he would need mine. Silently, with his hands on my shoulders we cried and grieved the loss that was sure to come.

Wishful Thinking

Eight laser light treatments later with no improvement I was summarily dismissed from his care. I was advised to have an MRI of the lumbar spine and visit an Orthopedic Neurosurgeon. I concurred with this request the next week and was told everything looked fine. As puzzled as I was the doctor sent me back to my general internist who was also baffled. My left ankle and foot were swollen and cold so I was sent to a vascular surgeon who could find nothing wrong. My internist also recommended I see another Neurologist. Why not? Neurologist No. 2 read the report of Neurologist No. 1, looked at my left foot and agreed with the diagnosis. I was asked to have an MRI of the cerebral spine, just in case, and those results, too, were fine. Nothing wrong there either. On to a physical therapist with no improvement or so I thought. Back to Neurologist No. 2 who insisted the movement was better and a cure was sure to be imminent perhaps in a year's time. Right, I thought.

Now my unfailing humor was threatened, balance was worse, leg muscles were doing little dances up and down both legs. I would make up tunes to match their rhythm. Leg cramps were painful. Having a bath was impossible for fear of falling while trying to manipulate and force my leg to obey. Could all this be from the famous "footdrop"? No longer able to walk the dogs or clean our home properly I was forced to ask Bob for assistance with duties that should have been mine. Soon this left me feeling defeated and useless. Hiring a young woman to clean our home left me feeling guilt ridden and older than my sixty-five years. I was envious of Eileen's energy level but, oh, boy, could she clean. And soon I fell in love with the idea. The guilt I could live with.

I guess we are all guilty of fantasizing once in a while. My secret wish now was to have Doctor House and his excellent team from the television series work relentlessly on this mystery ailment of mine. Surely he could use his unorthodox methods and tactics to free me from this prison. A giant splinter in my toenail perhaps. Invisible to the naked eye? What next? Was my Maker testing my patience and fortitude? If so it was tiring and I mentally sent this message upstairs.

Ending my treatments with Dom was unthinkable as my accidents continued and left me in constant pain. Dom felt Nos. 1& 2 dropped the ball and were not thorough enough. He convinced me to take another shot with a woman Neurologist. I was resolute in my decision to just live with it as the saying goes but not so Dom. This was now a challenge and he was doggedly determined to seek an answer.

Neurologist No. 3 was a breath of fresh air. We had a lengthy conversation and proceeded to the testing. Both legs were included and although the needles placed in the muscles caused some pain and the electric shocks uncomfortable I squeaked through. She asked me the date and the month and several other questions which I answered with flying colors. Finally I was asked to spell the word "world". Suddenly I felt playful and answered w-h-i-r-l-e-d. A moment's pause and then I heard her laughter. Dom had chosen the right doctor for me I was sure. Perhaps a diagnosis was near. Or at least a pinpoint of light in the distance.

However, when the moment of truth arrived I was told my condition was a polyneuropathy, damage to more than one nerve. She was truthful but I felt there was something left unsaid. Would I mind seeing her mentor from her days of training and get his professional opinion. He was head of the neuroscience unit at a hospital in a nearby city. If this was a motor neuron condition he was the person to see. Professional courtesy prevailed and an appointment was made for the following week. I smiled at my good fortune. This renowned physician would probe,test,and question. All the loose ends would be tied together. Dare I hope to have an answer?