Category Archives: Progression

Life Moves Pretty Fast

Last month there was a big ceremony at my former high school in Oak Park, Illinois. Four alumni were awarded the annual Tradition of Excellence, a recognition of work that is representative of the Oak Park River Forest High School ideals and mission. I was fortunate to be one of the recipients, based on a nomination from one of my classmates. As my ALS progresses, travel has become very difficult, and I wasn’t able to attend and speak directly to the 3000 students who piled in to the auditorium for two different presentations. Instead, I made a video, and my parents and two of my best friends went on my behalf.

That morning, I was agitated and I couldn’t figure out why. I suppose I was wondering if my words would land in a meaningful way on this audience. A big part of me was disappointed that I couldn’t be there, and I was anxiously awaiting feedback. I shouldn’t have worried. The events went beautifully, and the Student Council representative who introduced me and my video did an excellent job. Afterward, I received photos of my friends standing next to the wall where my photo would eventually be hung, alongside people who have made much grander contributions to society. It was extremely humbling.

But the best part came a few weeks later, when an OPRF senior sent me a message. Her business class finishes every semester with a group project that benefits a charitable organization of their choosing. Hannah had written to tell me that her group had chosen #whatwouldyougive and the ALS Therapy Development Institute. They made T-shirts using our logo and you can see and purchase them here.
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|Categories: Age, Life, Progression, Relationships, Research | Tags: , , , | Permalink

Redemption Song

I miss my handwriting. I miss doodling on the margins of a page and filling in the answers to a crossword puzzle and sending a thank you note and making lists. I miss dancing and real hugs and opening doors and swinging my legs over the side of the bed and putting my feet on the ground.

Last night Scarlett was in my lap reading herself a book. Her hair is down to the middle of her back and it ends in rings of gold. All I could do was look at that glittery hair against her little brown back. My hands won’t even rise high enough to touch her. It is heartbreak. I want to hold her so much that my stomach hurts and I feel a quickening in my chest. I have shed enough tears over this to generate my own weather pattern, and still my body won’t accept the fact that it can’t reach for this person it created.

I am becoming increasingly breathless, and my tongue is twitching inside my mouth as if electrified. It is horrifying to watch, just one more muscle growing weaker and caving in, the whole thing looking like a worn down soccer field full of divots waiting to trap an ankle and snap it. I can still talk, still swallow. But my whole body is tired, and my brain races with ideas that I could never realize.

These are true things. But there are other true things that are significantly more uplifting. Read More>

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

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