Tag Archives: scarlett

Summertime

Scarlett is staying home from camp today. When I asked her to get dressed, she ran to her bedroom and got back under the covers. She was wearing my nephew’s underpants, and two of his T-shirts, and seemed far too comfy to get moving. I mostly understood. It’s been a busy summer, and not at all the kind I used to have when I was a kid growing up in Oak Park, Illinois.

In those days, we didn’t do camp. We played outside, often right in the middle of the street or the alley, we went to the pool or danced in the sprinkler. Basically we entertained ourselves along with the other neighborhood children for three months, and sometimes we went on vacation to a Holiday Inn in Indiana or Ohio, or to my uncle’s cabin in Wisconsin where we swam in the lake and hooked wiggling minnows and leeches onto fishing rods that we cast out into the shining water over and over.

Scarlett’s summers are different. Read More>

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Not My Finest Moment

It’s been a frustrating few days. My wheelchair footrest has been broken, and I’ve been trying to get the company, California Home Medical Equipment, to fix it since May. I won’t even go into all of the mishaps between then and now, except to say that they finally picked up my chair on Wednesday, and left me with a loaner that makes the electric chair seem like a lounge seat on Air Force One.

The loaner chair was rock hard, and too big for me, and I couldn’t reach the button I needed to push in order to switch the chair from driving mode to seat adjusting mode. It was a very uncomfortable two days, and I called the company right away to tell them I needed my chair back. They were supposed to make many changes to it, switch out the battery, revamp the armrests and the controls which are becoming harder for me to use, and do a general maintenance check since the chair is now two years old. But I couldn’t stand one more day in the loaner from hell, so all they fixed was the foot rest, and now I’m getting my still-flawed-but-sorely-missed wheelchair back. Read More>

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A Day in the Life

Sometimes I think that people wonder what I do all day. I mainly think this when they ask “so what do you do all day?” No one is saying it in a challenging way, they just seem genuinely curious about how I kill spend my time. So I thought I would share a day in the life of me with ALS.

Monday

6am: Rob leaves for Chicago, and my assistant Marianela arrives. Otto is let outside. I’m awake, but exhausted. I decide to stay in bed longer even though it’s totally uncomfortable.

6:45: It was a good effort, but I can’t ignore the pain in my back and my feet anymore, so I call for Marianela. She lifts my head and my legs and swings me to the edge of the bed. Then she picks me up and puts me in my chair. I wheel to the bathroom, where she gives me my medication and puts my contacts in for me. We are trying to be quiet because, after a big weekend in Arizona, Scarlett is still sleeping.

7:15: Scarlett wakes up. She gets dressed, and I try to convince her to have breakfast. She eats three pieces of cereal. Read More>

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