Monday, March 19, 2018
Brother Richard DeMaria
Editor’s note: After leaving the Archdiocese of Miami, Brother Richard De Maria spent six years as a missionary in Africa. In 2016, he was diagnosed with ALS — Lou Gehrig’s disease. He has chronicled his journey of faith in accepting this disease in a monthly blog, “Journey to Death,” from which this blog is excerpted.
I continue to lose facility with my arms or hands, which are all but useless at this point. For some time now, I have needed help in shaving and showering. I receive help every morning in dressing and every evening in undressing. I also have someone feed me at all meals.
I was having sessions with an occupational therapist who brought me all kinds of utensils to help me eat, but I asked her why would I want to learn to use these when I have somebody who feeds me? She said that most people resist this loss of autonomy. Not me. In fact, I kind of like it.
My legs, on the other hand, continue to work well. I walk at a good clip and I also can do stairs. But I know this won’t last. A physical therapist gave me exercises which I do daily to keep flexibility in my legs.
Each day I develop techniques to adjust. For example, I have learned that I can drink my early-morning coffee in stages: the left hand can bring the coffee cup to my lips, but it shakes terribly. The right hand can take it from the left and hold it more steadily. But I know that my situation will keep changing and that each accommodation is only for a short time.
My mind seems to be holding steady. Because I can dictate to my computer I am able to complete projects like this one by just dictating what I want to say. My ability to dictate is going to improve in the future, as I have invested in a dictation program that is superior to the one that came with my computer. It is more sophisticated. For example, you can train it to add words to its vocabulary; and it has the ability to correct errors by voice command.
I continue to get great joy in watching movies and TV programs. I also tutor almost every day, which is important for me to do.
My reflections this month are the result of my thinking about the question: Why me? Why is this terrible disease afflicting me? What have I done to deserve this?
If I believed in the idea of a God who punishes us in this life for the wrong we did earlier — karma — it would be easy to answer the question why: It would be easy for me to find in my sinful past an explanation for this sickness that I have encountered. But I don’t believe in that concept of God. The book of Job is an effort of one Hebrew writer to eliminate the idea that sickness or disaster is a result of what we have done. All of Job’s friends, reflecting the popular theology that links problems and success with our way of living, try to convince him that the sufferings of his life are repayment for what he’s done wrong. Job insists that’s not the case and the writer of the story eventually has God agree with Job.
Despite this important insight, the idea of karma continued to play a role in Jewish thinking. Several centuries later, when his disciples asked Jesus if a man’s illness was a result of his sins or the sins of his parents, Jesus made it clear there was no connection between sin and illness. Because I accept this teaching of Jesus, I don’t waste time trying to link my illness with what I did in the past.
By the same token, I reject the idea that material success is a reward for a good life. Poverty is not a sign of moral weakness. It is true that Jesus said he would grant us anything we ask for in prayer. But the context of this promise reveals that this was a promise to grant us the spiritual graces we ask for, and not material riches or success. Accordingly, I pray not for a cure to this disease but rather the grace of perseverance.
In the history of Christian spirituality, the pendulum swings between two concepts: one concept says that we are responsible for the sin in our life; the other concept says there is very little we can do about the sin in our life. Most spiritual writing these days supports the second concept.
It seems to me that I need to put my emphasis on accepting myself as I am, as God created me. And so, I don’t have much room in my thinking for guilt. Even more to the point, I believe that this sickness is a gift that I have received. It has allowed me to truly relax and enjoy what time I have and to treasure the kindness that family and friends are showering upon me.
The amazing thing is that my days are full; it is very difficult to find an opening in my calendar when people invite me to do things. I spend many hours watching TV and taking naps and enjoying the companionship of so many friends who come to visit me. My personality was such that I would never have allowed myself to relax and enjoy life as I do now.
As a Christian, I believe that Jesus’ suffering somehow introduced a new kind of life into the world: a life of love. I believe that suffering is a privilege that enables me to play some role in making the world a better place.