Friday, April 17, 2009


I used to have it so easy. Read for 15 minutes in bed, wearily click the lamp to darkness, drop my glasses on the nightstand, snuggle into warm sheets, and doze off to sleep. I might not even wake up until my alarm jars me from slumber and I stumble to the shower/kitchen for an eye opening blast of steam/coffee.

Let's not get into what it would take for me to accomplish all the stuff I used to sleep walk through in a nighttime. Let's start small. Reading in bed.

Kirsten and I talked extensively about reading in bed together before we were married. We both anticipated the romance of cracking a new novel or the latest Thomas Friedman tome on the extinction of human life thanks to the global environmental/health/economic scare of the moment, lying side-by-side, sneaking passionate glances over our reading glasses at each others' rumpled end-of-day hairdos. Surely this was an activity we'd enjoy together long into our retirement.

Here's me reading in bed the other night:

Kirsten and I started talking about the effort and engineering it takes to make me comfortable reading in bed each night. So, here's a quiz: can you spot all the devices needed to make this simple task possible? Jot down your answers (assuming you still have full control over a pen, unlike me) and check them below.

  1. Reading lamp arched over the bed. Special purchase specifically intended for reading in bed. What we tried before the arched arm lamp: spelunking headlight (couldn't get it off my head or turn it off), various book lights (too dim, couldn't operate the switch, impaired page turning).
  2. Lap desk. Special purchase specifically intended for reading in bed. This one has a handle (handy for Kirsten) and a tray which I used to use for the bookmark when I could reach above the book to grab it.
  3. Book. Obviously. But has to be a book with firm enough pages to grasp and turn. I just rip the pages that are too thin.
  4. New! Piece of tape stuck wrong way out on finger to assist with page turning. Can't be too sticky so has to be handled by Kirsten a bit before it's usable.
  5. Pivot disk. Intended for standing transfers which I can no longer do. We put it under the lamp so it can swing away to get me into bed (using the Hoyer lift).
  6. Book under pivot disk. So lamp doesn't tip over on the carpet. Book title: "The Capability Maturity Model" by Carnegie Mellon University College of Engineering. Finally found a good use for it.
  7. Pillows. One under each arm. Left elbow pillow folded in half. One behind head.
  8. Hospital bed. Oh yeah, the obvious thing. We have it pushed up against our queen to create what we affectionately (?) call our Minnesota King-size bed.
  9. Catheter bag hung on side of hospital bed. I'll let you figure out where the other end attaches.
  10. Satin turning sheet. Thank you Lecia! Helps position me in bed and turn me over when Kirsten is half asleep.
  11. Hand sanitizer on nightstand.
  12. Large water pitcher because I need lots of water. Long straw made from plastic tubing to get it up to my mouth, thanks Craig for crafting these!
  13. Bed remote. This is intended to allow me to recline when I'm done reading. It works most times.
  14. Small non-skid, stick-on rubber bumpers. We have just stuck these to the "down" buttons on the bed remote to make it easier to push the buttons. It's helping.
  15. Light remote. This is a dimmer switch the lamp is plugged into to allow me to shut off the light when I'm tired. Works great when it hasn't fallen on the floor.
  16. Side rail. Works great to prevent me from falling on the floor. Mostly.
  17. Air mattress and pump. Small fish tank pump under the bed inflates an air mattress under my ass to keep me comfortable. Wishing we'd had this years ago.
  18. Small book beneath the book I'm reading to keep my current read propped up so I can reach it. I like to use "Prayers & Promises...when facing a life threatening illness" by Ed Dobson, even though it's a constant reminder of my situation.
  19. Folded tube sock under my right wrist to cushion it against the plastic lap desk.
  20. Sleeping pill to stop me from reading all night.
Got it all? A few items are not strictly for reading in bed, I guess. In fact, my nighttime routine has become a bit of a nightmare. We've engineered this one process, reading in bed, hundreds of times. We'll continue to innovate until I can't turn the pages, and then we'll need to solve that riddle too. I recently borrowed a friend's Kindle for ebooks. It was wonderful, but they are god-awful expensive, and someday I won't be able to use that either. Something's changing every day, every month--we need new solutions, new strategies, new capabilities to make this one thing doable. But it's worth it to give me one of the most normal feelings I have all day; and that's a capability maturity model I can believe in.

PS: Thank you to my beautiful wife for conceiving and writing the initial draft of this post.


Kirsten said...

Seems like I do most of the conceiving around here, hm?

nokomisgunbldr said...

S and K-

We've got to figure out if a track system (ceiling mounted) could work for you. I know it made a huge difference for my mom.

Tim Portz

Anonymous said...

a ceiling mounted track system seems the best choice. i'm pretty sure that one was featured in "too much, too soon" (heywards).
your bedroom set-up was impressive. thanks for sharing the pics, scott
you've got a great family (especially kirsten); they'll get you through anything.


lemon said...

My love from Greece, to both of you

Anonymous said...

If you are ready for online books, my husband uses to read on his communication device. I know you don't have one, but I'm sure you could do the same thing on a laptop. All you need is a doctor's note and it's $75/year, I think, to access any online book. Look into it... for future reference.

edward said...

thanks. you are an inspiration. i happen to have written the "small" book you mentioned.
ed dobson

Marie L said...

Wow--your blogs are enormously touching to read. Helpful as I'm a new CALS and my hubby is a PALS (2/18/09). Keep writing! What a gift! Marie and Jim Young, Coon Rapids, MN

Anonymous said...

Going to pass this along to my colleagues at SEI... someone has FINALLY found a practical use for CMM!

Anonymous said...

Found this blog through my sister-in-law. I had a wonderful laugh here! My mom had ALS and I was always worried that I was the only person out there stuffing pillows, propping up arms and knees, fashioning strange eating and drinking devices, using tape, sticks, cardboard to make things work for a time. And yet here, I'm happy to see that you and your beautiful wife are up to the same! I love it! What a blessing that you two are so creative!!