Dedicated to the grieving families of Seth Poling and Sandra W. Marlowe. May peace be with you. Does anyone ever sit in the place the missing loved ones had at the table? No. It will never just be a chair again. I had a place, you had a place, but that chair that was your favorite is now free for anyone to sit in. There is no chance I will see you sit in it again. No more memories will be made. I have to try to close the hole. I should at the very least take back this spot, sit once in your chair. Otherwise I will always be staring at a gap in space. But I can’t. It will always belong to you ..read more

This is not the Thanksgiving piece I intended to write, but this year I’m grateful and lucky simply to be alive. I’ve been hospitalized 3 times this fall. The first time I had double pneumonia. My lungs were a total white out when I was admitted. Lungs are supposed to be black on an x-ray, but mine were completely white and filled with fluid. No matter how much oxygen they gave me, I felt like I was suffocating. The second time, one of my nurses saved my life because she noticed very quickly that my secretions – what I cough up – were getting too thick and had a blood tinge. I almost died duri ..read more

My application for the ALS drug Relyvrio was shot down by insurance a few days ago. There is no appeal process because patients who are on ventilators are not included in clinical trials. That means insurance can say it doesn’t benefit us. It was very hard to get that news. They say I’m in the end stages, but that’s not true. Even though my ALSFRS-R score is 1- the lowest possible score – I’m very much alive. I’m starting to understand that I will never have access to any ALS drugs, that I won’t outlive my mom like I promised her, that I will die young and leave Evan a widower long before his ..read more

Docket No. FDA-2023-N-2608 for Cellular, Tissue, and Gene Therapies Advisory Committee; Notice of Meeting; Establishment of a Public Docket; Request for Comments Dear Drs. Califf and Marks, I am a young woman living with ALS, and I am writing in strong support of the approval of the ALS treatment debamestrocel, which has proven to be both safe and effective in clinical trials. ALS is a brutal enemy. This equal opportunity killer destroys the nerves that allow us to move, speak, eat, swallow, and eventually breathe. It is 100% fatal and has no cure. It can strike anyone at any time. When I was ..read more

“Nothing prepared me for the privilege of being yours.” – Sleeping at Last, “Turning Page”2 What you have to understand about the way I love Evan is that I am desperate for him. I can’t shut up about him, and I don’t want to. People say that the sign of a strong relationship is that it doesn’t appear on social media because the couple has nothing to prove. That makes me laugh because I am not writing about Evan for you. The truth is, I’m obsessed with my husband. He is my laughter and smile and safety. He is the oxygen filling my lungs, yet he snatches my breath when I catch sight of him unexp ..read more

Photo by Polina Kovaleva on Pexels.com I’m pleased to present the link to the story for which I was recently interviewed, “Can AI Voice Cloning Be Used For Good?” by Kaleef Starks, Mark Armendariz-Gonzales, and Clera Rodrigues. The interview focused on the changes ALS has caused in my communication, as well as my experience with AI voice cloning and preservation. To read my full interview, click the book icon on the left. It’s under the heading, “Rachel’s Story.” Enjoy reading ..read more

This piece is about the last summer I could eat before going on a feeding tube. Summer in Amber We held that whole summer In our strawberry sticky hands, Trapped it in our tiny kitchen Where sunbeams tangled with our legs Around too much furniture, Each piece an island Of earth-born treasure: Paper cartons of berries on the unfinished wood cart, Artichokes and avocados, mangoes, tomatoes, and ginger roots On the battle – scarred table. Sometimes a lone carrot Hid from our merciless knives. We hid from the diagnosis that confirmed, Even scheduled, my end. During those hours, our fears dull ..read more

“Every breath you take just proves how blessed you really are.” – John Landry “This is Rachel Doboga’s ventilator just after starting the nebulizer, and her oxygen is dropping to 95, now 93,” Evan says, holding his phone up to film my ventilator readings. He stops filming and turns off the nebulizer. “My head is on fire!” I say. “I’m sure,” Evan replies. “Your oxygen just dropped to 89. How are you feeling? Are you catching your breath?” I blink, my signal for “yes” and “good.” “Hopefully this video will help the pulmonologist,” he says, putting the phone down. I am having daily migraines beca ..read more

This is a photo I took on our cross-country road trip just before we crossed the Mississippi River. Ever since we adopted dogs, I haven’t been a fan of fireworks. They terrified Malka, our dog who passed away on September 26th, which was surprising because she was a fierce protector. She used to huddle with our other dog, a chihuahua named Pickle, to hide from the fireworks. We’re not surprised Pickle is afraid, though. As Evan says, we raised a coward. Here’s a picture Malka and Pickle huddled together. By the way, our bird Jasper is a saint during fireworks. Pickle always got to be the sma ..read more

Photo by Hakan Erenler on Pexels.com Eight years ago on June 8th, I was diagnosed with ALS. At diagnosis, I was given 2 – 5 years to live. We all are. I was just 28 years old. After my diagnosis, I immediately said goodbye because that’s what I was told to do. I was told there is no cure for the monster that had taken over my body, my life. I posted something on Facebook to the effect of, “I’ve just been diagnosed with ALS. Thank you all for being a part of my life.” I didn’t know there were other options, that even without a cure I could fight. My fantastic ALS clinic connected me with the lo ..read more