The Night Sky Surrounds Me: My Journey with RLS
Friday, September 05, 2025September 5, 2025 The Night Sky Surrounds Me: My Journey with RLS By Margaret O'Donnell, RLS Foundation Member Margaret O’Donne...
The Night Sky Surrounds Me: My Journey with RLS
By Margaret O'Donnell, RLS Foundation Member
Margaret O’Donnell is a Seattle playwright, poet and retired immigration attorney active in pro bono asylum cases. She writes about the migration of people, the effects of climate change on all of Earth’s creatures, the intricacies of human relationships, and the workings of US law and government. You can find more of her work at www.odonnellplaywright.com.
I watch the night sky. On clear nights, when Orion moves slowly from east to west, his archer belt pointing directly to Sirius, I feel myself moving with the Earth’s turning as I keep company with the moon, new to crescent to half to gibbous to full, cycling, ever cycling. Once in my nighttime wanderings, I saw an atmospheric river rushing directly over my head, exactly as if I were standing in a transparent bubble on a river bottom, looking upwards.
The night sky and keeping up with the weekly New Yorker were the best and the only good things about the four years I spent nightwalking during the COVID-19 pandemic. No matter how exhausted I was from lack of sleep, I had to keep moving.
Gabapentin, my RLS medication of 18 years, stopped working suddenly in December 2019. For two years, I saw three well-meaning but underinformed sleep physicians, who tried and failed to treat my refractory RLS. These doctors advertised themselves as experts in RLS; I believe they sincerely thought they were. They prescribed medications that had no effect, medications that worked for a few months and then augmented my symptoms beyond bearing, and medications that made me so sick I thought I was overdosing. My husband called 911 then – the result of one misguided prescription.
It's difficult to describe the despair that RLS evoked in me, because the disease robs me of both reason and creativity, of both hope and perspective. I was ashamed to tell even my close friends and family about my agony. When I tried, I saw the incomprehension in their eyes. After all, everyone knew someone with mild RLS symptoms. They could sleep. Why was it so hard on me? I didn’t know either.
I lived with this despair for the last two years of my RLS excursion to hell before I found the RLS Foundation in late 2023. I had no RLS medication during those terrible two years. I thought I was condemned, that nothing could help me. I was in a black hole, which swallowed up my ability to connect with my friends and family, scrubbed beauty out of every day, made my nights a torture chamber, and destroyed my ability to write.
I am a writer. Writing is my passion and my joy. When I retired in 2019 from the practice of law, I was free at last to devote myself full time to writing the plays and poetry that give my life expression and fully engage every part of my brain and body. Writing connects me with the world around me – the trees, the air, the soil, the Earth’s creatures. My life lost meaning a few months after I retired, in the years before I found the RLS Foundation. Does that sound overly dramatic? I assure you; it is not. The disease consumed me, body and mind and soul. My joy and my creativity died.
Scrolling for any information that could help, one day in August 2023, I found the RLS Foundation website. I called. Staffer Adrianna Colucci immediately sent me a packet of information – brochures, back issues of NightWalkers magazine, reports of RLS studies, and a list of RLS Quality Care Centers. The nearest expert was a thousand miles away, in southern California. I called Dr. Mark Buchfuhrer’s office at once and made an appointment to see him – a pulmonologist and sleep specialist with extensive RLS management experience and a leading RLS researcher – in September.
Then I had second thoughts. I couldn't bear the thought of sitting in a car on the way to an airport, getting through a security line, sitting for three hours on the plane, and sitting in a car to get to his office. I couldn’t sit still for more than an hour. And what if the visit was useless? So, I canceled the appointment. I made another appointment for November. I canceled that appointment, too. Finally, I made an appointment and kept it in March 2024.
March 2024 saw the worst flooding in a century in Los Angeles. The Los Angeles River raged far over its banks, fed by torrents of rain and whipped by wind. On the train platform at the airport, people dressed for spring wrapped their arms around themselves and cowered. At the hotel, there was no central heat; my husband and I huddled together over a space heater throughout our stay. We walked the half-mile to the doctor’s office the next morning along a street as wide and busy as a highway, as I castigated myself for coming to southern California and dragging my husband along.
When Dr. Buchfuhrer walked into the examination room, I was stiff with armor against inevitable disappointment. Why should this be different from my past experiences? Slowly, as he asked me about my long history with the disease, I saw that this time, this doctor would be different. It was the way he spent at least half an hour on my history, asking questions, that gave me new insight into my own journey. He wasn’t fidgety or bored. He seemed genuinely interested in me as a patient. It was when he said, “I know I can help you,” that I began to let my armor go. No other doctor had ever said that.
Dr. Buchfuhrer worked closely with me over the course of the year, tweaking the medication that has given me sleep again. Within three months of my first visit to his office, I slept three or four hours at a time. Within six months, I was sleeping through the night on most nights, with few daytime RLS episodes. In July 2024, Dr. Buchfuhrer enrolled me in an RLS research study for the new Nidra leg bands, a nonpharmacological device that uses tonic motor activation to alleviate RLS symptoms quickly, before they take over the body and mind. I didn’t need to use the bands until the beginning of this year, when, inexplicably, my symptoms began to recur every two to three hours during the night and sometimes during the day.
I didn’t want to increase the dosage of my medications, since I’m already somewhat drowsy and unsteady in the evenings under their influence. Now I use the bands most nights once and sometimes twice or three times a night. But instead of staying up for an hour, walking until the symptoms subside and I can sleep, I now get up, turn on the bands, and get back in bed within 10 minutes.
It's been expensive, tiring and time-consuming to travel to California for doctor visits and the Nidra band fitting, but what is it worth to have your life back? Dr. Buchfuhrer listens carefully to me and takes what I say seriously. I am the best source of information about my experience of the disease, and he honors that. He carefully calibrates my medication and dosing regimen and isn’t put out when it doesn’t work as well as he wants it to. I no longer blame myself for the disease.
RLS is a chronic condition. I know I’m not going to be cured, but now I am sleeping. I have my brain back. My doctor’s attention to and belief in me, the carefully calibrated medication, and the Nidra bands brought me back to life. I’m writing. I travel again. I connect with friends and family. I’m walking in the woods. I no longer blame myself. I am at peace.
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