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.


  1. No one has commented on this and I dont know why. You know all the normal things you get from a post like this so I just will give you a *Thumbs up*.

    I am sorry for how things are for the walk and the cabin and that I seriously this time just cant manage to make it.. but I will raise as much money as I possibly can muster, and some day there will be a cure because of the understanding it's put into so many people through Mel's eyes.


  2. Chris, as always, thanks for this post. Throughout this entire process, you and Mel have been a continuous source of inspiration to me. When I talk to Maryann and Rachel about role models, maintaining a positive attitude, and finding gratitude even in the most difficult situations, the two of you always come up as examples. Anything the two of you ever need, you just have to ask.


  3. Ditto what Greg said. You will always be held up in my family as a shining example of how to cope with grace and dignity in the most difficult of circumstances.

    Kathleen B.