Category Archives: Progression

Identity Theft

I think Otto might be having an identity crisis. He hasn’t said anything specific about it, but Scarlett changes his name nearly every day and I just feel that this must be confusing. Sometimes she calls him “Sticks” and other times she affectionately refers to him as “Phinneas.” She has spent hours telling him that his name is “Bernice”, and I once caught her chasing him in the backyard with a stick screaming “COME BACK, PROFESSOR!”

In case that thing about the stick alarms you, let me assure you that the professor was having the time of his life.

But really, what’s in a name? An Otto by any other name still farts as much. I guess I’ve been thinking about identity a lot lately, because there is so much wrapped up into what we consider our self, and it’s undeniable that parts of myself are slipping away from me. I’ve never been someone who dwells in the past, at least I wasn’t until I got ALS. Now I look back with a nostalgia typically reserved for someone who has lived twice as long as I have. I have never wanted to go backward, but I would like to go forward differently. I would like to feel more like me.

The writer Gerda Saunders recently published a book called Memory’s Last Breath: Field Notes on my Dementia. I read a review of the book and was struck by the following phrase: Read More>

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

Lake Archibald

When I was a kid, my uncle and aunt and my grandparents bought a house in northern Wisconsin, on a lake surrounded by woods. We would drive six hours from Chicago to get there, pulling into the gravel driveway and unloading our week’s supply of bathing suits and summer clothes. There was a small tub of water by the front door to rinse off sandy feet, and the screen door was a bit rickety from all of the slamming as kids ran in and out of the house. Inside, it was small. Two bedrooms, and a bathroom that wouldn’t fit three people, let alone a wheelchair. Not that any one of us had a wheelchair in mind all those years ago. We slept on the floor, on couches, some of us got beds, but I don’t remember how that worked itself out. We watched VHS tapes on a very small old TV in the living room, and played dice and Yahtzee at the big wooden dining table. There were Friday fish frys in the nearby town, and trips to the sweetshop, and later to a winery on top of a hill, where everything basically tasted like grape juice.

We went every year when I was growing up, and I even went up a few times in college. I announced my pregnancy to my grandma and grandpa at that wooden table. When my grandpa got sick, we continued to go to the lake. He could still shuffle down the stairs and the winding path to the water, even with his oxygen tank, but he had to take a break halfway down, so someone (my uncle?) built him a bench. My sister got engaged on that bench. Read More>

|Categories: Life, Parenting, Progression | 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