Category Archives: Life

Don’t Even Think About Trying To Escape

In July, my family acquired a new assistive device called the Hoyer lift. It looks like a torture machine with its dangling chains and numerous metal bars. I half expected it to work the way the machine in The Princess Bride worked, with me as a whimpering Wesley watching the six-fingered man turn the dial up to 11.

I think I’m mixing up my Christopher Guest movies. Also the lift doesn’t work anything like what I described above. Obviously.

As an aside, any time we watched The Princess Bride in my family when I was growing up,
my brother and I would tell our sister that the creepy white-haired dude from the pit of despair was her husband. That’s just the kind of nice kids we were.

The way the lift actually works is that I am rolled onto a mesh net every morning, and my dress is pushed up to my lower back, leaving my bare ass hanging out of a hole in the net so that I am able to use the toilet. It is the height of dignity. But it’s also critical, because lifting me manually takes a toll on my caregivers. I will happily swing around in a perverted hammock if it means taking better care of the people who are taking care of me. Read More>

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

You Don’t Call, You Don’t Write

This afternoon, I sat down to write. I mean, of course I was already sitting down, but I can’t help think of it as an action I still perform when I am committed to writing. Except that I wasn’t very committed. I ordered sweaters for myself and school clothes for Scarlett. I answered a couple of messages, but not all of them. I thought about the many thank yous I owe to our super generous #whatwouldyougive donors, but thinking about that was as far as I could get.

I’m tired. And I’m frustrated, because everything is hard. Because the dog keeps banging at the blinds in Scarlett’s room, and because my dictation thinks I said hanging instead of banging and banking instead of hanging.

I actually think I should be laughing. Otto is only going crazy because Scarlett put a life-sized skeleton in the front yard, and he clearly thinks it is here to kill us all. I should laugh because I can sit here ordering clothing online, which can only be considered a privilege. I should laugh because the other night when my niece was here for dinner, she toddled all over the dining room and then slid purposely and dramatically to the floor like a buttered noodle, face down on the walnut veneer.
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|Categories: Life | Tags: , | Permalink

Here We Go

Tomorrow is the first day of August, and the first day of the 2017 #whatwouldyougive campaign. I can’t believe that this week has arrived. First of all, when I initially conceived of the idea for this campaign, I thought it would only be a one-time deal. It’s beyond inspiring to see how many people joined, whether to take the challenge of giving up an ability, to donate generously, or to hold our signs and stand in solidarity with the many of us who can no longer stand on our own.

By far, my favorite part of the campaign week is the reactions from those who are giving something up in an effort to understand just a little bit of what it might feel like to live with ALS. Right away in year one, I realized that people were getting it. They were understanding the frustration, the loneliness, the helplessness. They were grasping the concept that life with a sudden disability is not only shocking, but incredibly inconvenient. They were grateful, some tearfully so, when they could use their entire, strong bodies once again. And I loved them for it. Read More>

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