August 25, 2009

The Purpose of Adversity

We knew back in 2007 that it was something bad, possibly debilitating, but we had no idea. Melissa went to doctors, Neurologists and orthopedic surgeons, carrying the ever-growing collection of MRI's, CTs and X-rays from previous visits for almost a year and still no diagnosis. She was ready to give up if this last visit to Emory didn't tell her anything.

We knew it would be bad news when the neurologist brought in a junior doctor who just sat in the corner. Mel and I both realized he was here to watch us as the doctor delivered the news.

No one expects ALS, not at age 35, not the incurable wasting disease that usually takes the elderly. People have about 3-5 years after diagnosis. It's what they call an "Orphan Disease", which means that too few people have it, so the drug companies don't research treatments for it because of poor Return On Investment. There is no cure, no effective treatment but Riluzole, which may give you an extra couple of months. And even if some trial drug looks promising, with a life expectancy under five years, anything not currently under review by the FDA when you're diagnosed will probably not be available to you even if it DOES work.

There was a long period of grief, anger, prayer. The usual. But oddly enough, there was a sort of comfort in knowing the diagnosis. ANY diagnosis, even this one. Even the worst case scenario in Neurology. At least we knew what we were up against, and what to expect. Comfort, like life, can sometimes be found in the most unexpected places.

After a while, I stopped praying for her to be cured. While I am a Christian, I believe in "reasonable" miracles, meaning things that are possible in the world, we just ask for the chance to be one of the lucky few to receive them. Like winning the lottery or being accepted to Harvard. These things are difficult and highly unlikely, but the do happen to SOMEONE in the world. Being cured of ALS in this lifetime is flat-out impossible, and I decided that I needed to come to terms with that.

So what to do when faced with a truly unwinnable situation? After months of searching, I believe the answer is to accept it, and try to discover what God wants us to learn from the ordeal. Wisdom is gained more by our failures than our outright successes. How much more insight would we gain from this, when the worst possible outcome is certain? I truly believe that this is the purpose.

So from time to time, I will be posting here about things I have learned from the experience of living with the knowledge of Melissa's diagnosis. Here's the first one:

There is always something to be thankful for, even in the worst of times

This is the first lesson that living with ALS taught me. Even when you know that your soulmate is living on borrowed time, even when it's tearing you apart with grief, you can still find things to be thankful for. This is more than a trivial game from "Polyanna", it is the way I turned my thinking around.

Melissa is so young to be diagnosed with this disease, but I am THANKFUL because since she has it now, I am more able to help her than I would be in my 60's.

The medical costs are expensive, but I am THANKFUL to still have a job in this economy, when millions have been put out of work.

And even without the negatives, there are all-positive things to be thankful for:

I am thankful that I work at a company that allows telecommuting. I save on gas, don't sacrifice hours of my day driving to and from work, and I can take breaks to tend to Melissa when I need to.

I am thankful that Melissa's parents are here to help us so much. I couldn't take care of Melissa and Matthew at the same time without their assistance (and good cooking!) Many people with this disease have no family to help them and have little health coverage to pay for assistance.

I am thankful to St. Gabriel's, our small but ever-so-lively church. The congregation there was so full of smart-asses already, that Melissa and I were hooked after our first visit. They have been great in supporting us and raising our spirits.

I am thankful for the internet, and social sites like Facebook and LiveJournal, where Melissa can keep in touch with friends every day.

I am thankful to the ALS Association of Georgia, who have provided us with essentials like wheelchairs and an adaptive computer that Melissa can use by herself.

I could go on, but the point is made. For the huge shadow that ALS has cast over Melissa's life, there have been hundreds of bic lighters, sprouted from the pockets of individuals and organizations that have made a bastion against the darkness. (I know that's a terrible mixed metaphor, but my prose is one of the casualties of improper sleep.)

One last item: I am thankful to you, our friends and family, for keeping us in your thoughts and prayers, and for keeping in touch with her. You have no idea how much that little effort means to her. As with ProjectFiver, the group is accomplishing what I could not provide her by myself, and I thank you.

August 14, 2009

Music for Summer Road Trips

Anyone who knows me knows I make mixtapes like nobody's business. So here's some Road tunes courtesy of a new app called 8Tracks.

August 03, 2009

What I learned from 7 days living in a Hospital

Emory Hospital Provides Unforgettable Culinary Experience

By Chris Kern,Travel Writer, "Go Fork Yourself" Magazine

On the rare and unfortunate occasions that one needs inpatient care, one would hardly expect such a destination to be of any culinary significance, would one? Well THIS one was delightfully surprised at the creations that I discovered at one Emory University Hospital located in the Decatur township of Atlanta, Georgia.

As I sped through the winding lane called Briarcliff towards Decatur, the un-air conditioned breeze wafting through my hair, I became lost in the charm of the tiny one-street subdivisions with their tantalizingly different architectural styles and subtle levels of homeowner neglect. I'll spare you the gory medical details, as nothing can kill an appetite like a lengthy description of surgery, and get right to the good stuff. Who would think, but the highlight of my day was the little breaks that I could steal away to sample the unique foodstuffs available in Emory University Hospital.

Macaroni and Cheese -- Asbury Food Court

While the debate over whether it is a mere side dish or deserving of full-course status will be debated for years to come, no one expects surprises from this unassuming comfort food staple. I admit, I ordered it as a palate complement to the stunningly gray Meatloaf Surprise that was served (the surprise being a small piece of yellow plastic that I discovered in my second bite). The Meatloaf was uninspiring with its day-old oatmeal texture and the fact that it took two packets of Ketchup and Texas Pete Hot Sauce to get the first hint of taste, but the "Mac" literally took my breath away and shone as the star of my supper plate that afternoon.

The texture of the macaroni noodles is the first discovery. True capital-I Italians favor pasta to be boiled "al dente", but the Asbury chefs boldly decided to push the envelope of semolina boiling and serve it with a texture so delicate and runny that you'll swear you're having fillet of jellyfish. The counterpart to these was the "cheese" sauce, which was equally as unexpected. Due to the Food Court's distinctive cooking style -- baking in large aluminum troughs -- the "cheese" had a duality of textures and flavors. Most of the dish featured the cheese in its runny, tepid form, which features only the slightest hints of cheese flavor, similar to the "white cheese" (tm) served at Subway. Quite novel, however, was the second texture, the crispy, cut-with-a knife top layer that delivers a tantalizing ounce or two of actual taste to each ice cream scoop serving of the dish, with amusing propane undertones.

The interplay of these layers was such a delight! Switching between fork-fulls of the blander bottom layer and a rationed slice of crispy top was not unlike spending hours in a sensory deprivation tank before attending a Death Cab for Cutie concert: The latter may be bland by itself, but after hours of nothingness, it seemed as mind-blowing as a Grateful Dead tour.

Kentucky Farms Sausage, Egg and Cheese Biscuit -- Refrigerated Vending Machine, 2D ICU

When gravity delivered this package to me (plastic inflated to prevent shattering), I thought there had been some labeling mistake. "I see only biscuit and sausage! Outrage!" I exclaimed to the other two sleep-hung-over occupants in the ICU vending area. I wanted to file a complaint to the management, but there was a notable lack of servers of staff in the area, and the staff that I talked to about it rudely told me to get out of their way, as they continued chest compressions on an elderly woman on a gurney. WELL! Were I not stranded there by a loved one in recovery and a ruthless no in/out policy on the parking lot, I would have driven elsewhere. But as things were, I swallowed my pride and tossed the wrong item into the microwave.

The dish emerged from the riveted aluminum door appropriately steamy and sizzling, however, so I sat in the Plastique Vieux chairs and bit with eyebrow raised in caution. Incredible. To my delightful epiphany, there was no mix-up from the vending machine, the egg and cheese portions were ingeniously injected INSIDE the sausage patty! Never since the invention of the "Uncrustable" Peanut Butter and Jelly sandwich has this reported been struck dumb by the delicious utility of culinary invention. The egg was admittedly a bit dry, but there was a cheese-colored juice like right-from-the-oven Pizza cheese that scalded my mouth and mercifully put taste buds out of commission. After two or three singed swallows, I was tasting no pain. The only way I see to improve this is to serve the sausage/cheez/egg INSIDE a closed biscuit. If the magicians at Kentucky Farms can manage that, I predict we'd have a food sensation not seen since the creation of "Turducken".

These are but the highlights of the exquisite delights that I experienced during my stay. Now I know why Emory is called a "Teaching" hospital-- because the cooks there could teach some top chefs a thing or two! Needless to say, the next time that I find myself rushed to the hospital, bleeding out one orifice or another, I may find myself NOT rushing to get back out again!