Category Archives: Life

Flight Times

I used to love traveling. I won’t lie and say I adored the airport or being on a plane, but those parts were never problematic. Of course, things got tougher after Scarlett was born. We used to fly, just the two of us, to visit my family in Chicago, and we had some dicey moments in planes. She would scream, I would sweat, other passengers would wave their iPhones in her face, and we would end up hiding in the back of the plane by the bathrooms until she calmed down.

But it was never enough to deter me from our trips together. I really enjoyed being able to travel with her, and for the most part, she was well behaved and received compliments at the end of each flight from relieved passengers who had at first eyed her with suspicion.

In the spring of 2012, I was having a lot of trouble with my feet, and I knew ALS was a possibility, but I hadn’t yet been diagnosed. Scarlett had just turned two, and she and I were flying back to San Francisco after a visit with my parents. Read More>

|Categories: Life, Parenting, Venting | Tags: , , | Permalink

My Unique Sound

Yesterday, I set out to conquer the world of voice banking. For those who are uninitiated to this fairly new and exciting technology, it’s software for people whose ability to speak might become compromised. Many—though not all—ALS patients will face deterioration or outright loss of speech in the course of their illness.

An article on the Muscular Dystrophy Association website says:

Not everyone with ALS loses their voice, but it’s a common symptom, especially in bulbar-onset ALS. While there’s no easy way to prepare for this prospect, “voice banking” is a viable option for preserving your unique sound and the identity it represents.

Ideally, you start early, before your voice is affected, which is where I am now. Read More>

|Categories: Diagnosis, Life, Progression, Research | Tags: , , , , | Permalink

That Time I Was Psychic

I was 26 and working for a book publishing company just outside of San Francisco. My job in marketing meant that I met with advertisers occasionally. Unfortunately for the ad reps, we had such small budgets for each book that we never really spent money, except maybe once or twice a year in the largest industry magazines. One of those magazines had just hired a new publisher, and he was doing the rounds of all the publishing houses in New York and California, meeting the important people who made decisions. And also meeting me.

When Rob walked into my office for the first time, he was wearing a suit and tie, something that no one wore there ever. Bay Area publishing? We were lucky if people had real shoes on. Read More>

|Categories: Age, Life, Relationships | Tags: , , , , | Permalink