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LIVING WITH ALS - Our Love Story
I have put off writing this story for some time, because it brings back the painful memories that I have been trying to erase from my mind, memories that apparently will never go away. I am writing this as a promise to a nurse, by the name of Vicki White, who suffered along with me through much of this ordeal.
Patti, my wife, and I had been married thirty-eight years. She was twenty- four years my junior. When we were first married, strangers used to think she was my daughter, and when we had a son, they thought he was my grandson. We had known one another for over ten years when we got married. We did it secretly and were married by a Justice of the Peace. Patti had gotten the marriage license and paid two dollars for it, and later claimed that if she had known I was going to be such a good husband, she would have gone as high as four. Our mothers went into shock, and her father said he had never expected to have a son-in-law as old as he.
Patti and I were made for each other and we had a thirty-eight year love affair. We did everything together. We were hand in hand, or arm in arm, wherever we went. She was an excellent businesswoman, and like me, was married to the golf business. We worked together as a team, both in business, and raising our son. We were always sending one another "love " cards and messages, and not a day went by that we did not tell one another, "I love you."
In 1992 I sold the Country Club that I had owned for thirty-nine years with the intention of retiring. Within two month I became involved with another golf club that was reorganizing, and Patti had become a secretary. Our son, in the meantime had finished four years in the Air Force, and had become a successful businessman, and lived in Arizona. We were all doing well and were happy and satisfied.
In the summer of 2000 Patti's voice started to sound a little different, and gradually became worse. She went through all types of tests, and they thought she might have had some sort of a stroke. Strokes were predominant in her father's side of the family. I can remember her coming home from work one-day crying. She had discovered that she could no longer sing. She had gone to college on a Music Scholarship, and was an accomplished singer. Eventually she lost her voice completely, and had lost her job, as communication was essential
We worked through this loss of her voice with a minimum of difficulty. We used to think very much alike, and this made it a little easier. Until we discovered the eraserboard we had been using a pad and pencil. The eraserboard was great and we had them posed everywhere in the house and always carried them with us. Finally we acquired the electronic device that you could type in your message and it would talk. Patti, being a rapid typist, could communicate very well with this, and it gave her a great mental lift, and she was very proud of her new means of rapid communication.
Tom Watson did a great job in making the Golfing community aware of this terrible disease, through the misfortune of his caddie Bruce Edwards. The final stages of his life were private, as they should have been. I am going to spare you a lot of that here, and go into detail in another media. The disease gradually takes the use of your body little by little, and you are continuously trying to find remedies to meet each crisis. The person with ALS knows that they are going to die, and how they are going to die. The cruel part of this disease is that their minds do not die. They will lay there completely paralyzed and trapped in their bodies. This is what happened to Patti, and the last stage was the most difficult time I have ever gone through, and will never forget.
Patti would rather play golf than eat. She loved the golf business and everything about it. She was very active in the ladies golfing community, and at one time she was the President of the City Ladies Golf Association. She also owned a ladies golfing clothing business, named Lady L's Country Club Sportswear. She operated it for 17 years and supplied clothing for a total of twenty-five Golf Courses and Country Clubs..
Patti started playing golf when she was twelve, and when she was seventeen, she won the City Junior Championship. She loved to play in ladies tournaments, scramble, or anything. She was my favorite playing partner and during the last ten years of her life, I played ninety percent of my golf with her. Neither one of us cared to drive our car, so our bet each week was about who had to drive the car. Patti was a good little golfer, and had acquired the nickname of "The Machine." If she ever got into the rough, I don't believe she could get out. She won so many prizes for being closest to the hole on par three's, they threatened to ban her.
The first year, after losing her voice, her strength and coordination remained. There was one particular hole at our course where her drive would be just about in the same place every time we played. Suddenly they were not reaching that spot, and each week, they became a little shorter. Then came the day when she decided that she didn't want to play the last few holes. Then it became only nine holes. Before long, she would only play her favorite holes. Then the day came when she was unable to swing the club at all. The final stages was when I had to help her out of the cart and take her up to the green to let her try to putt. Finally it got to the point where I could not get her into the cart.
I had Patti cremated and she is sitting over this computer watching me. When I die our son is going to put our ashes together and deposit them on our favorite golf course, and we will play together again. This time our bet will be, Who will drive the chariot?