“I get by with a little help from my friends.” Or, in my case, A LOT. Two weeks ago, I discussed the ALS village. Last week, I wrote that I’ve survived 12 years since ALS darkened my doorstep. The latter is not possible without the former.
I have ALS. That awareness has prompted a series of rapid-fire questions. While many of us would describe existence as being comprised of multiple chapters, I now have two distinctly different lives. Prior to ALS, I had led an unremarkable life largely characterized by good fortune. Some of…
Do you speak with an “ALS accent”? I know I do. Fortunately, my family and close friends have learned to translate my slow, slurred words into meaningful conversation. However, to the Alexa device that lives in our back bedroom and the Echo Show that sits near me, my ALS…
“It takes a village to raise a child.” That African proverb is a testimony to the primary, secondary, and even cameo influences that factor into the sustaining, nurturing, and ennobling of a human from infancy until independent adulthood. When done properly, a gradual lessening…
Just mention the term self-care in any conversation and you’ll soon have many different definitions. It can be medical, describing how patients with a chronic disease are taught to self-manage their illness. Or self-care can mean the pursuit of personal wellness and a healthy lifestyle. And we’ve all…
It’s complicated. That trite, two-word sentence has become, in the age of social media, the go-to characterization of any couple whose pairing defies analysis. In the best case, after a period in which their union damages one (or both) of them, the parties agree to go their separate…
Yup, it’s that time of year again — lag time! We’re in that weird space in time that’s just after all the holiday hoopla and before the “next big thing” comes along. It’s a time to catch up, reflect, and take a well-earned breather. And for those of…
“Reports of my demise have been greatly exaggerated.” —Mark Twain, in a letter to The New York Sun I spent the better part of November under the weather. I am always taken aback by the “uncommon” havoc the “common” cold can wreak on someone with the deficit baseline…
The new year is just beginning, and my email inbox is already overflowing with suggestions about the importance of setting goals and resolutions. But for many living with ALS, traditional goals and resolutions for self-improvement can feel empty and useless. In truth, most of us are just…
When I look back at 2018, I feel pride. I fought my ALS hard. I forced myself to finish all my meals, even when I had zero appetite, to minimize weight loss. I made it to all my appointments, though I had to reschedule multiple times. I asked…
