Accompanying Essay: My Dad Is The Face of ALS: Hopes For A Good Life
Last March, my dad, John Rooney, was diagnosed with ALS. In September, he shared his hopes for a good death.
When the time comes, I, too, hope he has a good and peaceful death. But, I hope for more for him. I hope for a good life.
If you talk to him, he will tell you he has had a good life, and that is true. He has a family he loves, a job that he is proud of and a legion of people who care about him. But until he takes his last breath, I don’t want him to talk about his life in the past tense.
ALS patients typically live for three to five years after the onset of symptoms. My dad’s symptoms began about two years ago. Even if he falls on the short end of the statistics, he still has at least a year left.
A year is a long time. It’s another birthday, another anniversary, another Christmas. I graduate college next year, too. My point, I suppose, is that before my dad or anyone else hopes for his good death, we shouldn’t lose focus on ensuring that he has a good life.
When he was first diagnosed, he made it clear that he would not let the disease define him. He would always first be a husband, father, brother and friend before he was an ALS patient. He still is. But as the disease progresses, it is harder to keep it from consuming him.
I now find myself in the middle of a year that has taken me around the country and world. I spent my spring semester at the University of Notre Dame studying in Dublin and traveling around Europe. I wasn’t home for two weeks before I left for a summer internship in Concord, New Hampshire. In August, I will be home for only ten days or so before returning for my senior year. By the end of 2015, I will have spent only one month of this year at home with my family in Chicago.
The result of this long, wandering journey is a strangely detached relationship with my concept of home and family. I feel as if I have temporarily become an outsider in my own house. I now have somewhat of a bird’s eye view of my dad’s situation — fully aware of everything that is happening, but not close enough to do anything about it.
Every time I come home, my dad can do a little less. Machines crowd our family room, and caregivers come and go. His new living situation is hard on him; however, it is maybe even harder on my mom and brothers. They have a front row seat to the end of his life.
It is harder, too, for my family to prevent ALS from defining us. My dad said from the beginning that he would continue to work as a journalist until his body would no longer allow him. With his hands gnarled and voice growing weaker, that time seems imminent. My dad has always welcomed laughter as a powerful and healing force. I don’t see him laugh as much anymore.
My point, I suppose, is that before my dad or anyone else hopes for his good death, we shouldn’t lose focus on ensuring that he has a good life.
There is no cure. The only way to really “beat” ALS is to live with joy, no matter how ugly its progression. ALS has gotten pretty ugly for my dad, but I still see in him the joy that has always guided my family.
It deeply pains me that I am not there with my family during this trying time. I want nothing more than to share my joy and love with them, helping my dad focus on living his good life. But I know he did not want his situation to prevent my brothers and me from doing a
nything we would have done if he were not sick.
Hard as it can be to accept, I am where I am supposed to be. My heart, my mind and my prayers, however, are always with my family.
My prayer is this: that my dad lives with joy and continues to live a good life before anyone thinks of a good death.
I know that is praying for a lot. It is always much easier to say something like that than to actually do it. Recently, my family has experienced this firsthand. As my dad’s disease impacts him more, it is much harder to refuse to let it define him, even though we all said it would not.
Through it all, I still believe my dad is living a good life — a hard life, but a good one. I know he will keep living a good life, full of joy in the face of sorrow. When he has finally given all he has to give, and his body has nothing left, I hope he has a good death, too.
Jack Rooney is the son of longtime Chicago journalist John Rooney, and an aspiring journalist himself.