ALS (MND) is a terminal disease for which there are no effective treatments. Within a few years, it gradually suffocates and kills its victims, first fully paralyzing them while leaving all sensation and cognition untouched.
This illness stills my legs and quiets my hands, forcing me to write the words you read here using only my eyes. It places me like a stone in this lingering twilight between darkness and dawn. Yet, this rare and terrible gift has opened me to what many rush past unnoticed in their time. As my body fades, my vision has grown bright.
This journal is my message in a bottle to you from a strange shore that you must also someday cross.
Open it and remember death, yes. But in remembering death, remember life. Let mortality sharpen your senses, widen your mind, deepen your loves, kindle your wonder. For we all dance with death. Some just hear the music more clearly.
Due to the upcoming publication of What Remains is Radiant (Godine Press), which will include much of this blog’s content, some original posts are no longer available on the site.
Please stay tuned for updates on when the print and audiobook editions will be available for purchase. These will feature the complete collection of 18 journal entries per season in a beautifully produced volume. In the meantime, if you found a particular post especially meaningful that is no longer accessible, feel free to contact me directly—I’d be glad to assist you individually.
I have also added several new posts to the blog that will not appear in the published book, and I hope you find them worthwhile.
Over the past five years of living with illness, I’ve developed a renewed appreciation for the value of books— audio and print—as companions, counselors, teachers, and friends. This appreciation is especially relevant for those of us living with conditions like ALS, and to individuals in hospitals, long-term care facilities, rehabilitation centers, emergency housing, correctional settings, […]