The second most common question people ask my wife is, “So what does Scott do all day?” It’s a great question, but I think their presumption is that, since I’m effectively retired and limited in mobility, I must have a great deal of extra time on my hands. I must sit around in my underwear all day, bored to tears watching daytime TV, and lamenting my former life as a corporate cubicle monkey. Well, those people would be wrong. At least for now. Although sitting around in my underwear is, to the eternal frustration of my wife, quite often reality.
But boy, when I finally get some pants on, there is no end to the multifarious activities on my agenda. In fact, I have never felt busier in my life. Between the more mundane things (getting dressed, eating, urination), the typical household things (opening mail, paying bills, managing spousal expectations), the ALS advocacy things (fundraisers, video, sporadic blogging), and the good stuff (time with family and friends), I constantly wonder how anything got done when I was working.
My to-do list has always seemed unconquerable. But my body can’t keep up the pace any longer. I sleep 12 or more hours a night, and many want-to-do’s and need-to-do’s simply don’t get done. I used to daydream about more sleep (as my wife still does), but now I dream about less. Sleep seems like such a waste of time. My life has been cut in half by ALS, and now my days have been too.
I’m a night-owl, so I usually go to bed between 10:00 PM and midnight. I’m lucky to be up by noon. By the time I get out of bed, get dressed, and eat lunch (I need help with all three), it’s probably close to 2:00 PM, which only leaves a couple of hours to check email and snail mail, make calls, do stretching and range of motion exercises, go to doctor appointments, etc., before my wife and daughter get home. I rarely find time to write or edit video. Many days, fatigue and depression derail even my least ambitious intentions.
Some people might suggest taking naps instead of sleeping in. I’m afraid those people would be wrong again. I hate napping, and getting up once a day is hard enough. For now, I’m sticking with the 12-hour day formula, focused on conserving energy for time with my daughter. But I hope to shift my day back a few hours and become more of an early-bird, so I can play with Eva on weekend mornings as well. It all comes down to balance really. Trying to find a balance between getting things done and enjoying what I got. And while I’d prefer a bit more time, what I got is pretty good.