About week after I figured out my illness we had a small birthday party for me with family and close friends. The conversation turned to why my arm was so week. I wasn't ready to break the news yet so I said that I had some discs bulging in my neck but the doc's wanted to rule out lead poisoning, MS, ALS etc. (technically all true). So it gets left at that. About two weeks later, my daughter Jackie ( future Physical Therapist) comes to me and says she doesn't think the problem is with my discs. She believed it was something worse (smart young woman). So I confide in her and she took it very well (later she would say that she didn't believe it was ALS). Finally letting someone know was a great relief to me. A few weeks later, the family watched the movie "50/50" together. It is a story about a man who has invasive cancer in his spine. A light comedy if you can believe it. After watching the movie I decide it's time to tell my wife Deanna. I wait until we are getting ready for bed ( I find it is easier to break bad news when you are in a state of undress). The moment is still so clear in my minds eye. I tell her that I think I have ALS. She straightens up all 4'11" of her, looks at me with those beautiful dark brown eyes and says "We will cross that bridge when we come to it!" Always the pragmatic one, she needs to see the test results first. She then gives me a long hug and kisses me. The type of kiss that let's me know she will always be there for me. It turns out I told her just in time because a few days later both of my legs gave out after climbing five flights of stairs in a parking garage. I had to hang onto a fire hydrant while she opened the car door for me. (fortunately we had parked right next to the stairs). I collapsed into the car seat exhausted and my legs twitched like crazy. This was the first time I had any issue with my legs.
When I got home from the Neurologist, the house was filled with 14 year old boys. I grabbed Dee and we went into the bedroom. She closed the door and I told her. She broke down rushed to me and we cried in each others arms. She then went out to get my son, Alex, so that we could tell him. How do you tell a fourteen year old that his dad most likely won't be there when he graduates high school? He had no idea I was that bad off since I had purposely not spoken to him about my suspicions (I wanted him to keep his innocence as long as possible).
We proceed to tell Alex that I have ALS. He stares back confused. Then I say 'It is also called Lou Gehrig's disease. His face contorts and he breaks down (it turns out that he had learned about Lou Gehrig in school the year before). We talked, cried and I held him for a long time. Meanwhile, Deanna went out to let Alex's friends know. They have been very supportive. As a kid I didn't have much support from my dad. He would go to work and come home. Bark some orders at me and never commit any time toward my interests. I decided at a very young age that I would do the opposite of my dad. I have either coached, refereed or have been a scorekeeper for my kids teams. Now that Alex is racing I support him by attending his races that I can access and by letting him enjoy himself. We watch longboarding videoed together and he helps me when I need assistance. He still has and does his chores too (after some prodding). My children love and respect me and are comfortable hanging out with me. We can talk about most anything. This is why we got up early on all of those weekends to play with them, paint soccer fields and shuttle them to games or races. I believe we have done a wonderful job as parents. My only regret is that I probably won't be there to give advice in their adult years. Though I don't worry about this much since it conflicts with being in the moment (see my first post). So I concern myself with talking and watching them at this very moment. I know they are still in their formative stages, but I do enjoy the beautiful people they are becoming. Now my job is to create lasting memories with them. Europe in May/June for three weeks is a nice start.
When I got home from the Neurologist, the house was filled with 14 year old boys. I grabbed Dee and we went into the bedroom. She closed the door and I told her. She broke down rushed to me and we cried in each others arms. She then went out to get my son, Alex, so that we could tell him. How do you tell a fourteen year old that his dad most likely won't be there when he graduates high school? He had no idea I was that bad off since I had purposely not spoken to him about my suspicions (I wanted him to keep his innocence as long as possible).
We proceed to tell Alex that I have ALS. He stares back confused. Then I say 'It is also called Lou Gehrig's disease. His face contorts and he breaks down (it turns out that he had learned about Lou Gehrig in school the year before). We talked, cried and I held him for a long time. Meanwhile, Deanna went out to let Alex's friends know. They have been very supportive. As a kid I didn't have much support from my dad. He would go to work and come home. Bark some orders at me and never commit any time toward my interests. I decided at a very young age that I would do the opposite of my dad. I have either coached, refereed or have been a scorekeeper for my kids teams. Now that Alex is racing I support him by attending his races that I can access and by letting him enjoy himself. We watch longboarding videoed together and he helps me when I need assistance. He still has and does his chores too (after some prodding). My children love and respect me and are comfortable hanging out with me. We can talk about most anything. This is why we got up early on all of those weekends to play with them, paint soccer fields and shuttle them to games or races. I believe we have done a wonderful job as parents. My only regret is that I probably won't be there to give advice in their adult years. Though I don't worry about this much since it conflicts with being in the moment (see my first post). So I concern myself with talking and watching them at this very moment. I know they are still in their formative stages, but I do enjoy the beautiful people they are becoming. Now my job is to create lasting memories with them. Europe in May/June for three weeks is a nice start.
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