Sunday, July 22, 2007

12-Hour Formula

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.


Anonymous said...

the weariness is unbelievable and unless you're a pals it's not too easy to comprehend. what's more lamentable is that even after 12 hrs of sleep you begin to flag within an hour or two. sleeping seems so much less restorative... which it is, of course.

melatonin may be something to try if need to gently regulate your sleep. but i'm sure you knew that.

good to see you back blogging. hope you're granted a boost in energy soon.


Anonymous said...

If that's the second most common question she gets, what the first?

Anonymous said...

Dear Scott,

Thanks again for sharing. Good to hear that you sense a balance, even if it's not perfect.

Time. Such a strange, precious thing... At 50, I look back on my life and appreciate the memories, and yet it all seems to have been so fleeting...passing before my eyes at a beautiful but fast pace, as if God wants us to appreciate the gift like a fast setting sun, a hummingbird at the window.

In Africa, in the villages that have no electricity, the people retire when darkness falls and rise with the sun...perhaps the way God planned it, knowing that we humans needed rest. My husband recently taught me a beautiful sura, an Islamic prayer, that reflects on the power and magnificence of God, or Allah. It states that Allah is beyond our understanding, that He never needs sleep. I had never thought of it that way. And yet the world was created with a lovely night sky to help us rest (unless you live near the poles).

As you find the need for sleep increases, I can understand how you must feel that it steals precious does...but there is still something about "time" that still remains a mystery to me...there HAS to's so steady...but then it drags at times and races by like the wind when it comes to important things in's a mysterious gift...but maybe there is as much value in the gift of a minute as in the gift of a year...for it is the minutes I remember...each of my most precious memories are probably measured in seconds...

Scott, this is probably my most "spacy" message yet...sorry! I just hope you can continue to allow your body to rest and to cherish the time you have with your family and friends...without feeling that sleep is a thief. I once read that Edison took frequent naps on a bench in his lab to rejuvenate. Whether it be naps or a long night's sleep, allowing your body to rest is important. Then your waking hours will be better, allowing more smiles for family and friends. When you are depressed, you might try to fake it. As a young teacher, I learned that if I went into the classroom feeling down or angry, my students quickly picked up on that and started acting up. If I tried to at least appear cheerful, they were better and
to my surprise I often felt better too. It doesn't always work...sometimes we just need to feel down, especially with ALS. Hopefully, you can continue to find that balance. Take care.

Kirsten said...

The first most common question is, "'s Scott doing?"