Saturday, January 24, 2009

The Man Who Couldn't Talk

She was his secretary and my best friend . . . both of them recently divorced. Perhaps I was one of the first to notice the magic between them. I remember the night I told her “I think you need to take a second look at Mike”. She practically screamed at me incredulously “Mike, you’ve got to be kidding me!?!” Of course, only I noticed the glow in her eyes that even she didn’t know existed yet.

It was a couple of years later that they were married and it was a match made in heaven. They were so in love and so happy together. Although he was 17 years her senior, the age difference was insignificant for them. They each understood that they would enjoy whatever time they had together. How ironic that understanding would become as the years passed.

Mike and Sarah shared a passion for wilderness camping and canoeing and travel were a huge part of their lives. Ever the educator, hiking with Mike always included lessons on flora and wildlife along the trail. His love of children was such a part of him and even later he was unable to walk past a child without establishing some rapport. The sight of an upturned face of a child would bring a smile to his face and a sparkle to his eyes. It was magical.

The diagnosis came in 1990 on the heels of a prolonged period during which we all noticed a change in Mike's ability to express himself. But then as an administrator for the local school system, we quickly
attributed his misused words, incorrect word endings or ‘ramblings’ to job related stress. Eventually, the school system began to notice and after a series of ‘reassignments’. Mike was offered a ‘retirement package’.

Even then, we his friends, being in denial, expected a rebound as a result of his retiring and removing himself from the source of stress in his life. The diagnosis: Primary Progressive Aphasia syndrome. (PPA). At that time there were less than 20 diagnosed cases worldwide but the consensus was that it began with mispronounced words and eventually progressed to a total absence of coherent words resulting in what some would call ‘babbling’. A loss of reasoning and judgement was predictable.

Thank God, none of us including Sarah understood in the beginning the course the disease would take over the next ten years. We expected and looked forward to a cure or remission of the disease. If his life became less stressful . . . if he got more exercise. . . . if he ate better . . . . if he worked with a therapist. Oh yes, we all had our suggestions for Sarah to help “get Mike better”. And we all imagined that he was better from time to time. But he wasn’t better and his ramblings continued until eventually Sarah explanation to the curious was “he can’t talk”.

Ten years later Mike's disease had progressed to the point that it was rare to understand a single word and his conversation although verbose consisted of mere babbling. Eventually, his judgement became impaired along with his ability to perform certain tasks. He could tie his shoes but was unable to figure out how to adjust the hot and cold water in the shower.

In June of 2000, on the last nite of Mike and Sarah's visit with me, we ordered in pizza. As Sarah set the table and Mike wandered around the kitchen I put on the music. Later I was to learn that I chose one of Mike's all time favorites. . . Boccelli.

As we finished off the pizza and beer, Sarah and I began to talk about the stages of Mike’s disease she would face in the future. Because Mike was unable to understand our conversation, Sarah and I were in the habit of talking about his disease in his presence.

But this night, as we talked a movement from Mike caught our attention across the box of leftover pizza crusts as together we turned to look at his face and Sarah said “You know what we are talking about don’t you babe!”. As he slowly nodded, he extended his arms in an apologetic gesture for the insidious disease he carried inside. . . . . for what he had become – the man unable to talk – unable to understand what others were telling him . . . . .unable to hammer the nail to hang the picture . . unable to figure out which were weeds to pull and which were the flowers his wife had lovingly planted . . . his remorse for ten years of not being able to be the husband that his wife so desperately needed. . . . of not being able to tell her how sexy she looked in her new dress.

Then he turned to me and I saw his plea for my forgiveness for the years he was unable to be the friend he once was. I saw his hopelessness of looking to the future and intrinsically knowing that it would only get worse. I saw painful tenderness in remembering the wonder of the love that he and Sarah had shared. As I watched, I longed for the Mike I once knew,. . . the fun guy with an infectious laugh who didn’t mind losing at Trivial Pursuit, . . . the best host who was one-half of the ‘Best Cooking Team’,. . . the gentle man who would make you feel like a queen in his home, an articulate, vibrant educator who only wanted to make the world a better place for kids, . . . a man I had once described to my friends as “this sexy guy at the ad building.

As time stood still and the air thickened with emotion that had been ‘contained’ for ten years, the tears streamed down his face and his babbling took on a soul of its own. As dusk fell outside and the soft light illuminated their faces, my dining room became a stage for a drama as I was privileged to watch the most beautiful, tender love scene unfold.

As I watched (a silent observer overcome with the power of the moment) the agony of the past ten years poured from the very soul of this man. With moaning, agonizing sounds and tears streaming down his face he lovingly traced with his fingers the outline of his beloved’s face. I saw Sarah's upturned face bathed in tears, her eyes searching his for answers for the reassurance she had longed for these long ten years, for understanding, for his touch, his response to her sexuality. Her eyes looked deep into his as she finally felt the miracle of a connection with Mike’s soul, and yet at the same time, wracked by the pain and despair of this damn disease.

As the room filled with emotion so deep that my breathing almost stopped, they slowly moved into each other’s arms and the stage became a dance floor. As I watched my two best friends, every bit of my being prayed that this was the breakthrough we had all been waiting for . . . that this was the miracle that would ‘fix Mike’…..that this story would still have a happy ending. As the song ended and they returned to the table laughing through their tears, ‘the man who couldn’t talk’, with the upmost clarity uttered four words that I will never forget as he looked at us and said “I feel better now!”

Who can explain what happened that evening. The medical field will tell you that PPA is a static disease and that it is possible to have moments of clarity. I prefer to call it a miracle and to wonder why I was so blessed to be a part of that beautiful and painful evening.

Of course, there was no happy ending. The next day, things were back to the normal routine as they packed the car to leave and Sarah patiently led Mike through the steps of getting dressed and ready to go. Maybe it was only then that I began to really understand the ups and downs, the hopes and disappointments and the final utter reality of their life!

Putting this down on paper has been one of the toughest things I have ever done. Not being a writer made it all the more frustrating but I felt it so important that it had to be written. Now I realize the irony of my struggle with words. . . . much like Mike's struggle with words . . . . .