Amyotrophic Lateral Sclerosis: ALS and the journey home
By Fr. Don Braukmann/St. Philip, Bemidji & St. Charles, Pennington
On Dec. 15, 2017, I was diagnosed with ALS by a doctor in Fargo. On Dec. 28 it was confirmed at the Mayo Clinic in Rochester.
ALS is also known as Lou Gehrig’s Disease. It is named after the Yankees baseball player who died of it in 1941.
ALS is a disease of the parts of the nervous system that control voluntary muscle movement. Nerve cells that control muscle cells are gradually lost. As these cells are lost, the muscles they control become weak and then nonfunctional.
I am in the early stages of the disease. For me, the initial symptom is a weakness in my shoulders. In human anatomy, the deltoid muscle is the muscle forming the rounded contour of the shoulder. As I understand it, my deltoid is substantially paralyzed.
In English, I have to be creative when putting on a vestment for Mass. Anything over my head or shoulder level is very difficult to do. Just removing a hanger with a vestment on it from the closet is nearly impossible.
I am not able to distribute Communion, even though it does not include maneuvers over my head, the repetitive action involved cannot be done for more than a very few minutes. Lifting a chalice at Mass takes all the strength I have.
The strange thing is, I can still shovel snow like a farm boy or move furniture around or run up steps at the school. All of that will change in time, but that is where it is for now. I will continue to write my column in OND as long as I am able.
The next step for me will be to connect with those who help ALS patients learn a few tricks to help them remain independent for as long as possible. I am eager to begin that process.
There is no way I can respond to all the notes and good wishes I have received from around the diocese. Thank you for your prayers and concern. Staff here at St. Philip’s in Bemidji has set up a CaringBridge account in my name to share any news as time goes by.
My focus, however, is to continue serving as a priest in any way I can for as long as I can. There is no set time frame ALS follows, but there is no cure and medications which presently exist are very expensive and only delay progression for a short time.
As I write this, I am at peace. I know a miracle is on the way … either on this side of heaven or the other side, it is on the way.
My prayer is simply that God will do what God needs to do. God did not cause this or “give it to me” to test me. Yet, I can’t wait to see how God will use the coming months to claim victory even over a disease like this. It will happen. I just hope (as St. Mother Teresa prayed) I don’t get in God’s way!
In closing, I want to share a prayer from a favorite author of mine, Father Henri Nouwen. He was a man who knew suffering and was able to embrace it with all his might:
Dear Lord, I will remain restless, tense, and dissatisfied until I can be totally at peace in your house. But I am still on the road, still journeying, still tired and weary, and still wondering if I will ever make it to the city on the hill.
I keep asking your angel, whom I meet on the road, “Does the road go uphill then all the way?” And the answer is, “Yes to the very end.” And I ask again: “And will the journey take all day long?” and the answer is “From morning til night, my friend.”
So I go on, Lord, tired, often frustrated, irritated, but always hopeful to reach one day the eternal city far away, resplendent in the evening sun.
There is no certainty that my life will be any easier in the years ahead, or that my heart will be any calmer. But there is the certainty that you are waiting for me and will welcome me home when I have persevered in my long journey to your house.
O Lord, give me courage, hope, and confidence!