Searching for a New Map

“I keep pulling it out — the old map of my inner path,” Joyce Rupp writes in her poem “Old Maps No Longer Work.”

I was introduced to Rupp’s poem on a spiritual retreat five years ago. Her words resonated with me then, five years past my husband Todd’s ALS diagnosis, and now the poem continues to resound a decade from diagnosis, as our ALS journey has gotten even harder.

“I squint closely at it, trying to see some hidden road,” Rupp continues.

So many maps no longer work once one’s life is sent off course with an ALS diagnosis.

Gone is the map that shows a finish line where Todd and I grow old and babysit our grandkids. Gone is the map that said if I followed God and made good decisions, then life would turn out well.

“Toss away the old map,” Rupp writes from her midlife soul, and then her desperate, grasping self answers, “I have to have a map!”

I, too, demand a map. I want to have agency — a sense of control over my life, self-determination.

Initially after the diagnosis, I tried to find that elusive map as I searched for alternative cures for Todd’s ALS. Some maps seemed promising, but they got us nowhere, and then Todd said he was having trouble swallowing so many pills.

Scientific pioneers are blazing new trails, so I wrote to government officials pleading with them to approve NurOwn now. If only we could try it, what do we have to lose?

There has to be a map, but for now, we come up empty. We don’t yet have the map to a cure.

Well, there must be a map to navigate this craziness. If only I could find a map on a self-help shelf — a book titled “How to Navigate a Spouse’s ALS Decline with Joy.” Many of us are shocked to find out how little help Medicare provides in the United States. “You mean I’m supposed to provide 24-hour care for my spouse without sleeping or we need to pay for help out of pocket?” That’s the rough road of disability. Carrying health insurance in the U.S. doesn’t offer a map for adequate care.

If this is what is, I at least want a map that shows my future. How will the kids and I manage in the aftermath of the final ALS battle? How can I plan when I don’t know the timing? I don’t know how old our kids will be when that day comes. What will I do for a career after spending more than a decade as my husband’s caregiver?

The world seems so uncertain now. How am I supposed to guide my kids when I don’t even know where I’m going?

I look for guidance from others who have walked similar paths, and other difficult paths. I’ve read stories from others in the ALS community and the broader rare disease community. I’ve poured over Victor Frankl’s “Man’s Search for Meaning.”

They only shed faint light on my path, because every person’s situation is unique. We each have a different level of emotional and physical endurance. The dynamics in each relationship between spouses are different, and ALS progression takes different courses. Some are gone in a year. A few live 20 years.

Rupp writes, “It is time for the pilgrim in me to travel in the dark, to learn to read the stars that shine in my soul.”

I breathe deeply.

“Let love be your guide in each moment,” whispers my midlife soul.

I close my eyes and wait for more. That’s it? That’s all I get?

I exhale. Perhaps that is enough.

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