Category Archives: Relationships

Notes on a Party

The Westin Copley Place in Boston was the location for this year’s ALS TDI White Coat Affair, a dinner and fundraiser that followed the organization’s 10th Annual Leadership Summit last week. Rob and I skipped the week of summit meetings, but showed up unfashionably on time for the party on Saturday night.

Corey Reich was sitting towards the entrance when the event began, looking his usual dapper self in a striped tie. I don’t like to hog Corey at these things, because I’m lucky enough to get to see him and his amazing family with some regularity back home.

I was introduced to Ellen Corindia, who’s had ALS for thirteen years and who uses a computer screen to communicate. Despite being in a wheelchair, Ellen went skiing with her partner last winter. They showed me the video, him skiing behind her, guiding her chair as the two of them zoomed down the mountain. Read More>

|Categories: Cure, Drugs, Relationships, Research | Tags: , , , , | Permalink

Don’t Cry for Me

“I don’t ask for your pity, but just for your understanding—not even that—no. Just for some recognition of me in you, and the enemy, time, in us all.” —Tennessee Williams, Sweet Bird of Youth

This weekend, my family and I went to the Bridge School Benefit concert. It’s a show put on by Neil and Pegi Young to raise money for the school that Pegi co-founded in 1985 to meet the needs of their developmentally disabled child. During the show, children from the school sit on the stage, and there are videos throughout to show some of their stories, as well as snippets of daily life at this incredible institution. I’ve been to the show at least 5 times, but this year, I watched the videos with a different perspective.

In the past, I have felt sadness and awe as I watched. Some of these children are severely disabled. Their families are clearly doing all that they can to give them the best lives possible, and the kids are shown smiling and learning, working hard. It’s honorable work, from all involved, and not easy, I’m sure. Still, by viewing their stories the way that I was—with pity—I now feel that I’ve been missing the point. Read More>

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

Blogger Girl

I’ve been blogging since 2007. That’s the year I started Deepish Thoughts, a site to keep friends and family up to date on my life, as well as on the bizarre and hilarious things Rob said. Which were many. When Scarlett was born in 2010, I shifted my attention to The Scarlett Letters, where I posted pictures and wrote to her about her life. And now, obviously, I’ve moved here to record my thoughts and experiences living with ALS.

I can’t keep up with two blogs, let alone three, so each time a new blog is introduced, an old one gets ignored. Or, let’s say it gets its wings, because that just sounds nicer. The blogs mark everything significant that has happened in my life over the course of more than seven years. Engagement, marriage, cross-country move, baby. The death of my beloved Papa, my dear brother-in-law, and several pets. It’s just a life, like any other. But I’m glad, now more than ever, that I chronicled it.

My story, with its unexpected trajectory, might make some people sad. But not me. I look back at those old posts and sometimes I just laugh. As I read about the traveling I’ve done, I find that I’m not mourning the loss of my abilities. Instead, I’m feeling insanely lucky to have seen so many different places. It appears that my past—at least the past I’ve chosen to document, and this is an important distinction—makes me happy. Though I’m not proud of all of it. Read More>

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