ReadAbility

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.

Trapped Under Ice

The recent heat wave here in Minnesota seems to have melted a few brains, along with a few inches of snow. Most of us Northern Folk know better than to pack away our parkas and break out the shorts after a brief February thaw, but morons and wishful thinkers abound in these parts. Granted, referring to a couple of degrees above freezing as a “heat wave” might sound crazy to some people. Such as those who don’t own long underwear and think ice fishing involves fetching a cube from their margarita. But frankly, the opinions of those who refuse to drive when the first snowflake falls don’t count for much around here. Although in fairness, many in the upper Midwest would love to see the snow disappear after the spirit of Christmas fades.

Truth is, we all suffer from memory loss as we migrate from season to season. In the spring, we run around half naked when the temperature reaches 50°F. Then we grumble in disbelief as we pull on sweaters and hats in the fall, when the mercury drops to the same level. You can’t blame us though right? Mother Nature tends to get a little bipolar this time of year.

It took me a long time, decades of personal struggle and mental kung fu, to finally appreciate our local climate (as noted in a previous post, Rain or Shine). But this year my tolerance has evaporated along with the moisture in our dry frigid air. Winter was hard enough to endure when I was healthy. Now my muscles seize up with the first blast of wind as I roll out the door. The effort required to bundle me up, the hassle of traversing ice-encrusted parking lots, and the stress of navigating a minefield of coughing and runny-nosed yokels, often leads to exhaustion. I am quickly becoming a hermit, not leaving the house for up to a week sometimes. In short, I am learning to hate winter again.

Staying inside is not all bad of course. It’s allowed me to read more books, watch more movies, play more board games with friends, and stare at more walls. When I finally go outside, it can be a refreshing, exhilarating, and temporarily blinding change. But I am more than ready for spring. My cabin fever is growing, and I need some serious vitamin D. So hopefully that stupid groundhog was wrong this year, and Mother Nature will stop teasing us soon. In fact, my sources tell me it’s going to be sunny and 40°F today. Speedo suit and flip-flops here I come!

Wait a second…Scratch that…Now it’s snowing profusely…Maybe just the flip-flops then…

All I Want for Christmas...

Let’s face it, I am way beyond wanting my two front teeth for Christmas. In fact, I would gladly trade the ones I have for a functioning right thumb. But medical miracles aside, I’ve had a hard time making out my wish list this year. When I was a kid, creating a wish list for Santa was a very strategic exercise, involving a delicate balance of toy catalog analysis, fun-quotient algorithm development, and parental manipulation. The stakes were high in those days. The slightest miscommunication could result in an unwearable velour sweater vest, instead of the hot new Star Wars vehicle of choice.

Now that I’m older and (don’t laugh) more mature, asking for toys feels a bit awkward, like asking for ketchup at an expensive steak restaurant. Furthermore, I don’t really need anything that I would put on a list for Christmas. I have more than my fair share of boxer shorts, and I will never wear a necktie again if I can help it. Tools are pretty much useless to me now, and so are those tree-killing page-a-day calendars that used to collect dust on our desk. Perhaps I could use a catheter bag cozy during these cold winter months, but who wants to ask a friend to knit that for Christmas?

Truth is, Christmas has lost quite a bit of luster for me. I tend to dread the shopping season and prefer to focus on time with friends and family versus the stress of finding the perfect gift. Still, every year my mother and my mother-in-law hound me for a Christmas list. Despite a few feigned protests, I eventually oblige with a collection of random thoughts, such as the following list from this year:

• A cool new winter hat, the pale blue one I have is getting a little shaggy
• A casual long-sleeved shirt, size extra large tall
• Some cool pants that actually cover my ankles while sitting in my wheelchair, 36 x 36 should do the trick
• A pair of warm, easy to slip on shoes (easy for someone else to put on I mean), mostly for going out in the winter but perhaps also in the house, size 13
• Strategy board game (my latest geek-full hobby) that doesn’t require me to hold any cards
• CD -- LCD Soundsystem (the "Sound of Silver" album)
• The latest Thomas Friedman book, something about hot, flat and crowded I think
• A six-pack of good beer
• A good old-fashioned head scratching
• Chocolate covered almonds
• Wheelchair with an onboard commode, every man’s fantasy gift
• Diaphragm pacemaker, although this one is a little expensive, about $20,000, and is not approved by the FDA for ALS yet

Such a list has become typical for me. I start with some rather boring and practical items, throw in a couple of fun things I probably wouldn’t buy for myself, and keeping with my boyhood tradition, finish off with a few fantastical gifts only Santa Claus himself could deliver. But like many parents of young children, I care far more about giving than receiving. The magic of Christmas has been renewed through their eyes. Although I must admit, I noticed a present for me under the tree, and I’m dying to find out what it is. No pun intended.

Merry Christmas to all, and may everyone get their two front teeth this year, whatever that might mean to you.

Birds, Ice, Levitation...No Dice

The weather is nearly perfect today. About 75 Degrees and sunny, a few puffy clouds float around casually, and a slight breeze cools my feet through the open patio door. I sit at our kitchen table and watch the birds empty the new feeder hanging from our deck. I was never into bird watching before ALS. But the activities available to me are dwindling.

So are the minutes for which I can be safely home alone, as I am now. The girls won’t be home for another hour and a half. I decide to practice my psychokinetic skills. I attempt to levitate the newspaper over to me, which lies at the other end of the table. I stare at it for like five minutes, but no dice. A sense of disappointment creeps over me. I really thought I had it that time. I make a mental note to consult my old physics textbooks. Perhaps there is an important scientific principle I am not taking into account. I resign myself to watching a gaggle of birds crapping on my deck.

For no apparent reason, it occurs to me that life is like an ice cube. You only have so much time to figure out what to do with it before it melts away, and the tighter you hold on, the more it seems to slip away from you. Also, life can be pretty cold. But that sounds too depressing, so I try to find a positive angle.

Hmmm. Life. Ice cubes. Maybe, life can be cool and refreshing. Like a beer. Only without the ice cubes.

I decide that the “Life as an Ice Cube” metaphor is not working, and perhaps I need to relax my grip. I try to sit still and clear all thoughts from my head. The first part is easy, the second leads back to ice cubes. And beer. And images of birds pooping on my physics textbook. No wonder I can’t levitate anything.

Okay, for real this time. I take a deep breath, close my eyes, and focus all of my energy on gently lifting the newspaper. I think maybe it’s working, and when I open my eyes, I see the corner of the editorial section move ever so slightly. But logic dictates a breeze through the patio door must have caused it. Still, I steadily hone my levitation skills so that one day I can read the paper like anyone else, only with my paper hovering slowly in front of me. Then I will levitate one of those pesky birds down to my deck and make him clean it with a toothbrush. No good, ungrateful birds crapping on the deck and never a simple thank you for the food.

Taking Candy From a Baby

It's official. My baby daughter Miranda rolled from her tummy onto her back today, making her more mobile than me (minus any motorized vehicles of course). Sure I can still discuss politics, eat solid food, and control my bladder better than she can. But I can no longer use the phrase, "it's like taking candy from a baby" in a credible manner. I'm not kidding. We verified my theory scientifically with a Tootsie Roll. She's still got that sucker locked up tight in her hand. So, much like I noted my decline in comparison with Eva in a previous post (Two Brains Passing), Miranda has managed to surpass my physical skills in less than four months. Perhaps the sibling rivalry has begun.