Monday, May 14, 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.
“We will cross that bridge when we get to it.” This was something my father always used to say to me when I worried about the future. Sometimes when I try to envision my life further down this path, I worry that I won’t be able to tolerate the loss. For example, last night, I was just barely able to get my hand to my face to address an itch. What will it be like when I can't do anything for myself?
Then I remember my father's advice: I'll cross that bridge when I get to it. I have come to learn over the years that problems seem worse when we look forward to them than when we are actually going through them.
A story comes to mind: Whenever someone was injured, I would back out of the crowd and allow somebody with more experience to come forward. Then, while I was out on a river trip with some of the novices, one of them gashed his foot badly. There was no other adult on the outing. I stepped into the situation with amazing confidence, as if I knew exactly what I was doing. As it turned out, I did the right thing and everything was okay. So there's an example of where things were easier when I actually crossed the bridge than when I tried to imagine it.
That's how I feel about this illness: When I have to go through it, the grace and strength will be there to endure it.
Any number of people write me to tell me that they have me in their prayers. I suspect that they are praying that I get better. I think what is happening is that their prayers are enabling me to keep this positive spirit in the face of daily diminishment. So keep up the prayers and don't be discouraged if I don't report improvements in health. Rather, when you read of my positive outlook, take credit for that.
One decision that is ahead of me relates to feeding. I am already committed to the principle that we are not required to take advantage of extraordinary remedies. But is using a feeding tube an extraordinary remedy? I'll think about that when I get there. Right now, I am eating very well with the help of an aide and have even put on weight, something that is not common with this disease.
I recently watched a movie (“It’s Not Yet Dark”) about a young man in Ireland who was diagnosed with ALS. When he decided to go on a ventilator, he made the comment that everyone would choose that rather than die. I thought to myself that I would not make that choice, but his comment has forced me to reflect on this further. I ask myself: Is this a form of cowardice on my part, to give in so easily to this disease? Do I lack the nerve to fight to live longer?
I know that when I first developed this disease and spoke about accepting it, my African friends would respond: “Don’t say that!!” I realized that they saw this as a form of weakness and a lack of manly virtue on my part: a failure to value life sufficiently. So now I ask myself whether they are correct: am I giving up too easily? I think not.
The man in the film referenced above was young: He was the father of four young children and he had not yet fulfilled his goal of making a great movie (a realistic goal given his early success as a film director.) In other words, he had not yet lived his life, he had much more to accomplish.
That is not my situation: I am not young, but have lived 75 years. As far as I can tell, I have accomplished everything I needed to accomplish. There is nothing left on my “bucket list.” My only desire in life was to work with the poor as a teacher. Fortunately, I have been able to do this, despite my failure to avoid long periods in administration. I worked with the migrant poor of southwest Florida and with poor students in Africa. What more can I want? As I look back, I have had the joy of deep interactions with many students, most of whom remain in my life today.
If I had more years, what would I want to do? I would use them to do more tutoring.
If I had more time, I might be able to make one last contribution in the field of theology. I do think I am coming close to some understanding of faith that I would be able to share with the world.
In any case, I am satisfied with my life. I also am eager to experience the mystical moment that I believe will occur at my death. My sister, Gail, says that I am not giving up, but rather choosing how I want to make the transition to the life that follows this life. For this reason, it is my intention to refuse any extraordinary means to keep me alive.
The basis for my faith is my observance that in this world there is a dynamic that always applies: out of death comes life. Or to put it another way: without death there is no life.
So I will not take any extraordinary means to keep alive, but will strive to welcome with open arms the Lord who comes to take me to himself.