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One year ago today, I had an appointment with a doc I liked whom I hoped would give me if not the final answer, then at least AN answer of SOME sort to a medical question I’d been chasing for about four years. It was a grey day much like today but I remember it being a little warmer on my drive to her office in LaGrange.

The mission: Get the answer. Lacking that: Get a referral to someone who could give me the answer.

The problem: I’d lost function and power in my left arm and fine motor skills in my hand. I’d first noticed it when I couldn’t shuffle papers in my office one day. That became shirts I couldn’t button and cutlery I suddenly found difficult to maneuver.  I was dropping things unexpectedly, unable to pick up or use garden tools I’ve worked with for 35 years. I lost control of pans I was removing from the stove and one morning, I fumbled a mug of coffee and dropped it on the dog. His startled and pained “Yipe!” broke my heart.

I recognized the questions they’d begun asking me. Was I tripping a lot too? Was I falling down? It took a moment, but I finally recognized that they were asking me about possible symptoms of MS. I went from primary care, to PT, to ortho, back to primary care, to physiologist, back to primary care. No answers.

I was ready, I thought, to hear the answer or the referral. I was ready to take this to the next step and resolve it.

Turned out, I was not as ready as I thought. I was not ready to ask my doc questions about the possibility of MS and hear back that she was concerned that it wasn’t MS. I asked what she thought, asked if she would share that concern.

I was not ready to hear that she was concerned that I had ALS and that our next steps would be a battery of tests and we needed to get me to a neurologist immediately. This idea had never occurred to me in my quest for answers. She assured me repeatedly that there were many tests we’d have to go through before anyone could tell me anything definitive.

I didn’t hear anything else after that.

I made it to the car some forty minutes later, and sat in the parking lot under a low pressure system that I felt all the way inside me. I couldn’t drive. I didn’t know where to go. Panic was building in my chest and threatening to escape, where it would bounce around the car interior, searing everything in its path.

I grabbed my phone and pushed a couple buttons. Was she going to be available? Would she be with a client? She answered.

I could barely get words out. “I need a person. I need a person RIGHT NOW.”

She said she’d meet me. She told me where to go. There was a Starbucks. A table outside. I don’t remember getting there. Then there was lunch. I don’t remember getting there either.


How to tell my friends? I had…what…maybe a year to exit my job, sell my house, find the care I’d need, rehome my dogs. Oh my god. My dogs. How was I going to do this? Over the next three days, I vacillated between “I can handle this as long as I have my friends with me” and sobbing in a puddle on the kitchen floor when my knees would simply give out and I’d sink to the ground. The dogs would relocate to wherever I happened to go down and huddle close, holding me in their own way.

The friends came and I told them. They held my hands and cried with me and promised to be here for whatever happened. There was an Eagles concert that weekend—the plans for which had been made months earlier—and I decided to go. There was dinner first, and over dinner, the friends got serious for a moment and informed me, “If you have to go through this, when you lose mobility, you’re coming with us. We’ll redo the basement. You’ll be with us. It’s not a question.”

A couple hours later at the concert, that same friend gently pulled me out of my seat and asked me to dance, and he held me as I cried on his shoulder and told him how scared I was, while Wasted Time played behind us. “No regrets, Nancy. No regrets,” he whispered.

The whirlwind of the first week ended when a friend came to visit from Indianapolis. Over wine and fear, I asked her to promise me that when the time came, that she’d be the person who accompanied me to Oregon, where I would seek physician assisted suicide, if we had to go down this path. I had no family locally and I would not ask my friends to care for me in that way and I would not go out locked down inside my own body. If I had to do this, I would go on my own terms. It was at once the most horrible, most beautiful conversation I’ve ever had.

It took two and a half months to get to the right doctor to be told that the problem with my arm is not ALS. In that time, I held onto my secret except for the chosen friends who would walk it with me.  I worked through the exhaustion and the terror and did presentations and fundraisers and hung onto John’s words—“No regrets, Nancy.”

The Youth Outlook staff knew something was up—they could see the repeating doc appointments in my calendar week after week. I also hung onto their words: “Nance, you’ve taken care of everyone for so long. Let us take care of you a little bit. How can we help?”

At the end of May, I was told in no uncertain terms that I did not have ALS. Almost twelve full weeks later, of living under that particular low pressure system offering to break loose and swamp my life daily, contemplating how for all of the heart issues and cancer that runs in my family, I was possibly going to be taken out by a neuro disorder that steals everything from you and holds you captive inside a paralyzed body.  We’re still working on treatment for the loss of function in my left arm. We’re not sure it’s coming back. But we know it’s not something that will kill me.

That started one year ago today. I will never be able to thank my friends enough who showed up, who held me and let me cry, let me rage, let me be incoherent and panicked. Some things you can never pay back, you can only pay forward. When people show up in those scalding moments of I NEED A PERSON RIGHT NOW, those are your people. Keep them close. And remember John’s words.

No regrets.

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