Category Archives: Relationships

The Shining

Scarlett and Rob are skiing in Tahoe. I have spent three nights without them, and am definitely looking forward to having them home tonight. While they were gone, I had various people stay with me, including my sister, two caregivers, and my friend Andrea who is well-versed in ALS having lost her father to the disease.

So I’ve been well taken care of, but my mood was slippery. On Saturday afternoon, I sat on the back deck in the sun, watching Otto run laps to impress me. Still I was alone and lonely and I allowed myself a significant amount of time to reflect on how shitty this situation is. When Rob and Scarlett first started going to Tahoe without me, I was incensed. It hurt to be left out, especially because I was just beginning to understand that I would be left out of so many things, even while I was still alive. I have never felt like there are places I couldn’t go. At least, not places where I wanted to go. When your legs are strong and your feet will carry you, you can go anywhere. When your voice is strong and your breath a guarantee, you need not question your place in the world. When your hands can open and close and your arms can reach up and out, you are allowed to be connected.

But my breath doesn’t come easily, and I can no longer sleep in a normal bed without torturing myself and my family. So Tahoe trips take place without me. As do trips to Arizona and Florida and even concerts at inaccessible venues with smoke machines that would have me gasping whether or not I could roll in unassisted. Whose world is this, Nas asked, and his answer the world is yours doesn’t feel true to me anymore. I certainly still have a world, but it seems to have gotten much smaller. Read More>

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

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