By now, many of you are wondering if I’ve taken a serious turn for the worst. Or is it worse? I’m never sure about that, and I don’t feel like looking it up. It’s true that my body continues to weaken, and it’s getting harder to breathe. My speaking voice is really quiet, which means that Otto just laughs at me when I tell him not to do things (he openly mocked me by eating my peanut butter sandwich off the counter last week while I looked on, and later he acted all innocent like he just hadn’t heard me telling him no. I hope he gets diarrhea.)
My intention was to blog twice a week when I started in 2014. Now my intention is to blog today, and we’ll just see what happens after that. Summer was good, although as usual it went by so quickly that I feel like I went to sleep in June and woke up in September. Scarlett got prescription glasses and went to her first sleep away camp for one week. The glasses are already broken. I mean, did I really even need to say that? We didn’t even send them to camp with her, because it’s not like we’re amateurs here. But we did think she should wear them to school, and clearly that is where we went wrong.
Sleep away camp was a great success, and when we picked her up she informed us that Read More>
Who wants to talk about #whatwouldyougive?
Trick question! This is my blog, and we’re going to talk about whatever I want to talk about. And this particular post is long overdue. Part of the reason I haven’t been talking about the campaign is because there is almost too much to say. August was a huge success for us, and our incredible team members brought in 170K, a number I can barely believe. As many of you know, our goal is to raise 250K for research at the ALS Therapy Development Institute in Cambridge, Massachusetts. These brilliant folks have a promising drug that can go to trial in 2018—but not without help.
What you may not know is that our campaign isn’t over yet. We launched the second wave of #whatwouldyougive this month, and it’s a big one. We are partnering with hundreds of social influencers (Bloggers, Tweeters, Instagrammers, and more) to raise further awareness about ALS and our efforts to find and fund treatments and a cure.
How does this work? Read More>
“The scale says 65 pounds,” the physician’s assistant says doubtfully.
“Well, that can’t be accurate,” I say. “I mean, I know I’ve lost weight, but not that much.”
Molly agrees, from her spot on the right side of my wheelchair. She is my visiting nurse, and has been helping the PA move me back and forth so they can get a giant sling wrapped around my body. Every time I’ve used this machine, the PA says the same thing.
“This was donated, and it is a $10,000 piece of machinery, so when it goes, we’re out of luck.”
The tarp-like device is attached to a hook in the ceiling and when the PA presses the button, the whole thing rises like a thick uncomfortable hammock, with me trestled inside on splayed legs. The first time we seem to near an accurate reading, but then the ties on my boots get caught in the wheelchair, and the whole thing has to be redone. Twice more they lower and lift me, like we’re at a construction site instead of inside a hospital bathroom. Read More>