Saturday, 15 June 2013


Remember this. No matter how wise you are, not matter how witty you are, no matter how charming or wealthy you are, youth will always align with youth and age will always know better.

At Betty's Run for ALS, I saw a young man in a wheelchair and was reminded again that this disease is no respecter of age. Like cancer, it attacks regardless of youth. It does not align itself in particular with those of us past our prime. It is malevolent, seeking its victims where it can and taking them no matter. It was difficult to see such a young man facing such a difficult future.

Perhaps even more difficult was the look in his eyes. He could see us, the older patients, those further along and so different from him. He could see our loss of mobility, ability and strength. He could see his future and I could see his reaction played out like a movie on his face. There he was, surrounded by those who loved him, chattering with his youthful friends; there he was in his time of living, facing death, cold, mean, harsh. Fear is what I saw.

No amount of youth could save him from this disease. No alignment with his young friends could protect him from what ALS will do to him. His reality was painful and clear. His is the face of ALS that we should see, the face of a life yet to be lived. When we talk about ALS, we should talk about the young, those whose potential and possibility is so curtailed and cut by this brutality.

It is a general truism that when younger people get ALS, they live longer with the disease. While not a firm rule, it happens often enough except perhaps in cases of Familial ALS. So it is not enough that this young man has such a terrible condition, but he must bear it for so much longer until its ultimate end.

Nonetheless his challenge is the same as mine. His challenge is to live life as fully and completely as possible in the time he has, to live with ALS before he dies with it. In this, and only this, are we in alignment. Youth may align with youth, but living with ALS strips away the age barrier and forces us all to look into the same dark mirror. This is our alignment.


  1. This is so eloquent Richard, I see this young man and it breaks my heart. You are so right ALS is no respecter of persons. I could not believe that you were one of its victims when you first told me you had it. ALS was something far away from my thoughts so it was such a shock to hear from you that you had it. My lovely son with such an unlovely disease. I cry for you too. I love you so much and always will.

  2. Your Mom is right. ALS doesn't respect the age of the person. I been following a kid for several months, his friends and classmates just graduated high school. He should be beginning his life not fighting to survive one more day. His Mom's strength is remarkable. As is your Mom.

    Your words are powerful and raise awareness with each entry, each word. Keep writing because even though I don't have ALS , I am disabled. It gives people who are disabled hope too.