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 … Continue reading The Empty Chair
Category: love
Back to Basics: What I’m Grateful for This Thanksgiving
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, … Continue reading Back to Basics: What I’m Grateful for This Thanksgiving
On My Husband’s 37th Birthday
"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 … Continue reading On My Husband’s 37th Birthday
My California Kitchen
Photo by Ella Olsson on Pexels.com This piece is about the last summer I could eat before losing the ability to chew and going on a feeding tube. Summer in Amber We held that whole summerIn our strawberry sticky hands,Trapped it in our tiny kitchenWhere sunbeams tangled with our legsAround too much furniture,Each piece an … Continue reading My California Kitchen
The 4th of July – ALS Style!
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 … Continue reading The 4th of July – ALS Style!
Eight Years In…
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 … Continue reading Eight Years In…
On the Other Hand
2 It can be hard to "live my truth." Just because I have had a revelation or realization does not mean I can instantly incorporate it into my lifestyle. Especially because my hope just got a kick in the teeth. The latest bump in my pump did not work. This means more time on oral … Continue reading On the Other Hand
For the Love of Dog
2 I have become a tobii wizard. It's true. Once upon a time, it took me fifteen minutes to type one paragraph. Now, I glide across apps, carrying and adding to my content, dipping into shortcuts to rearrange my words into uniquely crafted messages that sound authentic to yours truly - all at a … Continue reading For the Love of Dog
The Sun’ll Come Out April 19th
3 I haven't written a lot about the problem that has rendered me bedbound for quite a few months now. You may think you understand the severity of the situation. However, what you know is the tip of an iceberg that you soon discover is actually the edge of a glacier that is moving inevitably … Continue reading The Sun’ll Come Out April 19th
Gross True Love
3 2 3 2 At my most recent clinic, the nurse pulled out my mic-key - the feeding tube that allows access to my stomach - so they could give me a fresh one, and all of my breakfast came out like a volcano. Before the nurses could even react, Evan dove in and covered … Continue reading Gross True Love
How I Live Now: Life With ALS 