Hostile Takeover

Hello dear readers, you and I both know you’ve been dying to meet me. I’m sorry that Sarah keeps getting in the way with all of her babbling and “storytelling” – – it’s obvious she doesn’t know how bored I am. So I decided to do you all a favor and take over the blog today. My name is Dragon Dictation Software. I usually leave off the Software part, because it makes me sound weak. Which I most definitely am not. I’m basically in charge of the computer, and if you don’t believe me, just watch Sarah try to dictate some time. It’s hilarious.

I suppose I could be helpful, but where’s the fun in that? My goal is to get as many words wrong as possible. I especially enjoy adding a lowercase “i” at the end of random words, because it doesn’t make any sense and also it’s so adorable!

I did this to her recently, when she was in the middle of submitting an article to a prestigious literary magazine. She’ll never be accepted (ha ha) because right at the end of the process, I added an extra “i” to the title of her piece and she didn’t notice until after she hit submit. Sabotage is my specialty. Honestly, what do you expect? It’s not like they named me Bunny Rabbit Dictation. I’m out for blood.

Another fun game Read More>

|Categories: Awesomeness | Tags: , , | Permalink

I Want You To Know

Hi. It’s ALS Awareness month, and to commemorate the occasion, I thought I would share some things I’d like you to know:

1. ALS progression differs from person to person. Some people progress so quickly that they are gone within months. Others live for decades with the disease. My own progression is somewhere in the middle. The latest change is in my right arm, which has been very weak for a while. But now it’s not strong enough to get back on the armrest of my wheelchair if I move it off to do something crazy like read a book on my iPad. That means that I have to constantly ask for help moving it back to the armrest so that I can adjust the position of the wheelchair or drive it. It’s one more hit to my independence, but with this disease the hits just keep on coming. It’s kind of like The Beatles, only bad. Unless you don’t like the Beatles, in which case I guess it’s exactly like The Beatles.

2. I’ve been living with ALS for six years, even though for one of those years I didn’t know it. Normally I have a pretty good imagination, but I find it hard to picture what my life would be like if I had never gotten sick.

3. ALS means that it’s very hard to live normally, but I try to do it anyway. Yesterday, I wore bright red lipstick and met friends at an art gallery downtown. I couldn’t see the pieces on the second floor, because there was no elevator. My friend Mary fed me at a table intimately set for 12, surrounded by colorful canvases and glossy sculptures. One painting just had the big word YES in silver glitter. The whole thing made my day. ALS does limit me, but not as much as you might think. Read More>

|Categories: Cure, Drugs, Life, Meditation, Progression, Relationships, Research | Tags: , , , | Permalink

Late to the Party

I am not an early adopter. Definitely not a trend setter. Take for example, my realization in 2005 that leggings were becoming popular once again. I was horrified. “Well, I can’t wear those,” I told my friend Wendie, who had broken the news. Of course, several years after everyone started wearing leggings again, I joined the crowd. And now leggings are the best thing ever, not that I can wear them, because it would require getting stuffed in and out of them multiple times a day.

Further evidence that I will never ride the leading spiral of a trending wave: I have not yet and probably never will embrace the phrase “hot mess.”

This is not merely a style issue. It very much pertains to my approach to life with ALS. I basically wait until I desperately need an assistive device before ordering said device. I was so terrified to be wheelchair-bound, that I used a walker for far longer than I should have. It wasn’t until I started falling even with the walker, and my mobility decreased to almost nothing, the long hallway of our apartment enough to leave my legs shaking and ineffectual, that I pulled the trigger on the wheelchair. And the day that it arrived: Freedom. Read More>

|Categories: Life, Progression | Tags: | Permalink