A diagnosis of ALS
Monday, November 13, 2017
*Brother Richard DeMaria
Editor’s note: After leaving the Archdiocese of Miami, Brother Richard De Maria spent six years as a missionary in Africa. He has chronicled his journey of faith in accepting this disease in a monthly blog, “Journey to Death,” from which this blog is excerpted.
Nearly two years ago, while working in Kenya, I began to get easily tired by walking. Coming home in January 2016 for my brother-in-law’s funeral, everyone noticed that I seemed exhausted by the trip. Since I was scheduled to come to the U.S. in late April for my biennial holiday, it was decided that I should remain here, and I embarked on a series of visits to doctors and tests.
Nothing surfaced to explain my weakness, but the doctor suggested the possibility of ALS — better known as Lou Gehrig’s disease. Many more months, tests, and consultations later, the doctors concluded that I have some form of the disease. However, there are so many different forms of ALS that it is impossible to predict the future. For example, Steven Hawking has a form of ALS that has allowed him to live for more than 40 years. My doctor has a patient who has lived 30 years. Others die within a year. So I don’t know much more, except that I am sick, and we must keep monitoring the progress of the disease.
I am not really surprised by this outcome, just disappointed about the uncertainty that remains. And so the advice, “live one day at a time,” becomes all the more important for me to observe.
What amazes me is how calm I am about the prospect. This calmness is not the result of ignorance of how this disease slowly but inevitably takes away all one’s abilities until one dies. I visited my cousin, Tom, every year for the seven years he and his wife bravely, heroically, fought the ravages of the disease, and I know well that a seven-year battle is unusually long.
What produces this calm in me? My faith in the saying that God never sends us a cross without the grace to bear it. My experience in life has always proven that to be true, and so I am confident that somehow or other I will develop, late in life, the humility to accept the certain loss of strength and abilities that is inevitable.
I also hope that this will lead me to a deeper experience of unity with my God of surprises. I will also, I hope, come to a deeper understanding of that theology which says that we are called to make up in our sufferings what is lacking in the sacrifice of Jesus.
My calm also comes from the knowledge that I will be accompanied during this time by a loving family, my brothers in my religious community, and a hoard of friends who have always supported me over my years. I will not do this alone.
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