Sometimes there’s a bump in the road, and life changes for a few days or a few months ” a broken arm, a broken water heater, a broken into house or apartment. Sometimes, however, that bump changes everything, altering not only the road traveled, but how it is traversed.
Tom Holmes is pastor of St. Paul’s Lutheran Church, a small ELCA church with a small congregation. He ministers to a much larger flock, however, through his column in the Forest Park Review, which offers his insights into the human condition.
Now his story-telling includes observing himself as his life path alters in response to the effects of PLS “Primary Lateral Sclerosis, which has been part of his life for the past 10 years.
Until ten years ago, Holmes’ path was that of many clerics. He grew up in Manitowoc, Wisconsin, a small town of 30,000 with a mix of northern European, Polish and German. College was St. Olaf, and seminary was the Lutheran Seminary in St. Paul, Minnesota.
He became pastor of a church in Madison and loved both the city and that church. He also loved his wife, and when she wanted to go to seminary, he looked for a position in a city with a seminary. Of the possible options, Chicago was the first to offer a position and Holmes was installed as pastor at St. Paul’s 22 years ago.
Life proceeded. Children grew, and the congregation was served with weekly services and sermons. Then came the bump.
Holmes says he first noticed that something was, as he put it, “not quite right” when he ran and noticed his left foot tended to drag. He asked his doctor to check it out, and at that time, all the neurological tests came back negative.
He says, “I would tell them something was wrong, and when they couldn’t find anything wrong it was very frustrating.”
Fast forward two years, and now both Holmes and the doctors could spot neurological difficulties. The final diagnosis was PLS. Unfortunately, however, PLS is diagnosed not by a specific test, but rather by eliminating all the other options.
PLS was the conclusion after eliminating Multiple Sclerosis, Lou Gehrig’s Disease, Parkinson’s, Lyme disease, and brain and spinal tumors, in a medical journey that included five MRI’s, a spinal tap and numerous other tests.
PLS is cousin to the far better known ALS or Lou Gehrig’s disease. Those with ALS progressively lose control of both voluntary and involuntary muscles. ALS is a terminal illness, and death usually results within three to five years from respiratory or heart failure.
PLS is slightly different. As said, Holmes first noticed his first symptom 10 years ago. Since PLS affects only the voluntary muscles, the heart and respiration are unaffected by the disease. At the same time, life is dramatically impacted.
Holmes notes that his physical abilities continue to progress downward at a constant rate. He walks slowly and somewhat haltingly, and while his ideas are crystal clear, his speech is inflected and some sounds are difficult for him to form.
He remembers that when his speech was first affected, “I talked with a slur ” like I was drunk. People at a church dinner thought I was drunk, and I had only two glasses of wine in four hours!”
As speech has become both more difficult for him and more difficult for others to understand, Holmes has been creative in tending his flock. For a while he included a printed copy of his sermon in the bulletin. When that no longer worked, he asked members of the congregation to read his sermons.
Since the progress of the PLS is steady, Holmes has been able to project the course of his disease and anticipate the decline in his abilities. During the past three to four years he has been planning for the time when he would not be able to function as a pastor.
Holmes is both pragmatic and philosophical about his current situation.
“I knew this day was coming”, he says. “My adjustments are bite-sized, I have time to digest them, and reach equilibrium before another issue comes, so it’s not really traumatic.”
He speaks of grief work.
“The only way out of pain is through it,” he says, “to reach a new place where life is hopeful again”looking forward, or at least living in the present rather than looking back.”
He knows that his past included tennis and running; his present includes swimming and canoeing.
“The ability to image, to imagine a future is very important,” he stresses.
Through this time St. Paul’s, and the Lutheran Synod ELCA, have been involved and supportive. Two years ago, St. Paul’s added a part time intern; this past summer Christine Thompson joined the church as a full time intern.
Holmes will stay at St. Paul’s, one-quarter time, and has submitted the paperwork to the Synod for a partial disability pension. His work at St. Paul’s will be more in the background than behind the pulpit and the new found time is slated for writing.
A new direction
Every pastor is a story teller, and Holmes is no exception.
“I like to write”, he says. Under the editorship of Lorien Menhennett, he started telling stories in his REVIEW column about a fictional pastor, addressing issues in Forest Park by, as he puts it, coming in through “the side door”.
He knows that his future will include much more writing, and also plans to study some of the finer points of crafting with words. He will head to the University of Iowa this summer for their writing symposiums, and is applying to the Lily Foundation for one of the grants they offer to pastors seeking to re-tool.
He will continue the column in the Forest Park Review, and hopes to expand into the Journal. Stories of growing up in Manitowoc amuse his wife, who grew up in Queens, New York, and these might grow into a book.
He already has a title for a book about his walk with PLS, “Progressive Disorder”, which he thinks perfect with the inherent oxymoron.
Holmes does not ask “how can this be”, but rather says that “God has a way of using your weakness to show his strength.”
He continues, “There can be spiritual progress as your body is falling apart, and this is not your achievement, rather it is something given to you.”
He says his recipe is “to hang in there, stay constant with the grief work, stay connected to your community and pray.”
As a Lutheran, his faith is faith in the midst of ambiguity.
“We have to live with not knowing and, when we are not given all the answers, to make our peace without having a nice, neat Newtonian universe,” says Holmes.
He takes his cue in this from Martin Luther, who, according to Holmes, was a theologian of ambiguity, who rarely spoke of direct words from God, but rather mediated comments.
As might be expected, Holmes has a prayer that has become his favorite. It is from the Vespers liturgy:
“Lord God, you have called your servants to ventures of which we cannot see the ending, by paths as yet untrodden, through perils unknown. Give us faith to go out with good courage, not knowing where we go, but only that your hand is leading us and your love supporting us; through Jesus Christ our Lord.”
For Holmes, there is every reason to believe that the bump in the road has also become a launching ramp into a bountiful future.