‘Can’t get there from here’: Friends helped me through dark days

If you grew up in New England, you’ve most likely heard about a fictitious exchange between a tourist in need of directions and a reticent Mainer. When asked the best route to the tourist’s destination, the Mainer replied, “You can’t get there from here.”

What an absurd response! However, the past two years have shown me that perhaps these words aren’t absurd. Let me explain.

The Urban Dictionary lists two interpretations of the Mainer’s response. It could mean “the place is remote and the route is hard to describe,” or, referring to a difficult challenge, “the problem cannot be solved.” Both interpretations apply to my life since I was diagnosed with myasthenia gravis (MG) in 2020.

Unlike the fictional tourist, my remote place isn’t a physical destination. It’s where I am today: a place where I’m emotionally able to cope with MG.

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My route is composed of the dark, confusing, and painful days that followed my diagnosis. During that time, depression overwhelmed me, and my emotional resources were drained. My life became a problem that could not be solved. Medical, financial, and emotional obstacles greeted me each morning and, come nighttime, accompanied me to bed.

I compare my experience to Sisyphus’. I didn’t roll a stone up a hill. Instead, time after time I had to confront my fears and cope with physical and emotional pain.

I overcame my fear of MRIs. Soon after, a myasthenic crisis necessitated a 10-day hospitalization. During this stay, I was forced to deal with the fears and stress that accompany plasmapheresis. I completed this treatment, but then, on the day I was discharged, my doctors informed me that I had developed avascular necrosis in both hips. This necessitated two surgeries. When I got home after the first one, I was diagnosed with COVID-19. Six weeks later, I learned that I had glaucoma. My struggles seemed endless.

These health issues, coupled with a treatment regimen that included high doses of prednisone, brought a mental collapse. Sleep was almost impossible. At 4 a.m., I’d find myself baking quiches, making beef stew, and canning preserves. Despite having a housekeeper, I’d be vacuuming and mopping floors at midnight. I’d think of my life prior to MG and cry uncontrollably. I developed emotional wounds that felt like they’d never heal.

Then I remembered a conversation I once overheard between my mother and a family member who had lost a child. On our end of the line, Ma said, “It doesn’t matter what happens to you. Everyone has their losses and sorrows. You still have to get out of bed in the morning. You can’t give in to it. You go on.” Remembering Ma’s words spurred me to action.

I did some research and learned that my experience wasn’t unique. According to the U.S. Centers for Disease Control and Prevention, 6 in 10 American adults — roughly 200 million people — live with a chronic disease. Some of these conditions cause symptoms far more severe than what I experience with MG. A portion of this population will live shortened lives. In many cases, pain will be a constant companion.

Turning to my team

I began to see that just as the lost tourist needed the Mainer’s help, I needed emotional and practical assistance. Not giving into MG was something I couldn’t do alone. My friends stepped up and joined me on my journey.

Ned, Liza, Dave, and I called ourselves the Four Musketeers. Twice a month they brought lunch, and we played cards. Laura showed up with a $600 Amazon gift card, and when I needed a recliner, she insisted on paying for it. Barbara stood by me in emergency rooms and went above and beyond what one should ask of a friend. Ron, Forest, and Cindy spent entire days sitting with me as I recovered from surgery. Shawn did grocery runs that always included a lunch where we caught up. Patti called, sent cards, and visited me in the hospital. Joshua’s visits kept me connected to the fun side of life. Roxie, his canine baby, often accompanied him and brightened my mood. My team helped me through those dark days.

There aren’t words for the gratitude I feel toward these friends. I wouldn’t have made it without them. As the Alsatian polymath Albert Schweitzer wrote, “In everyone’s life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.”

When I was a lost tourist, my team pointed the way, rekindled my spirit, and kept me going. They showed me that no matter where you’re going, you can get there from here. I’ll always be thankful that God sent me this team.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.