Wednesday, August 31, 2005

365 A.D.

Today is the first anniversary of my diagnosis. Yes indeed, it was one year ago today that I walked into a doctor's office, thinking I might have a pinched nerve or some other manageable back injury (oh how naive I was!), and was essentially whacked over the head with a 2x4. I was told I had a horrible, incurable disease. Or it was just stress. Why is it doctors always seem to say it might be 'stress' when the alternative is fatal, or they just don't have a clue?

That day was etched, as if with a rusty knife, into my mind forever. I walked out of the doctor's office in a daze. I sat down in the car, blazing hot from the humid summer heat, and did what most anyone would do. I called my mom. I then called my wife, and proceeded back to work, where I walked in, grabbed my stuff, and promptly walked out without uttering a word to anyone. On the way home I stopped at Dairy Queen, picked up a BBQ sandwich and a hot fudge malt. And fittingly, as if via some cosmic foreshadowing, I tripped on the way up the stairs and smashed the bag of food all over myself. I decided on a beer from the fridge instead. Within the span of one hour, I went from a normal day to sitting at home on our couch, contemplating the end of life as I knew it. We had just learned Kirsten was pregnant a few weeks ago. My bright future with them had just been erased.

On the one hand, let's call it my weaker left hand, I'm in worse shape than I was a year ago. The insurgents have been effectively kicking my ass, blowing up motor neurons left and right (mostly left) at the rate of several a day. That's not a scientific description of course, I'm just saying it that way for dramatic effect. But metaphorically it's true. The disease is waging war on my body, and as with terrorism, there is virtually nothing I can do to stop it.

More specifically, my left arm is much weaker. Typing is more of a chore than it used to be, and I screw up quite a bit. My right arm is starting to be affected, but still in pretty good shape. I can't really carry my daughter in her car seat anymore. My balance is much worse, as I've mentioned in the past. I've fallen a few more times recently, and walking is rather tiring. I've started to avoid climbing stairs when possible. I can no longer run.

I have fasciculation throughout my entire body, and much like the Energizer bunny, they just keep going and going. 24 hours a day, 7 days a week. I can feel vibration in my ear drums. In my face. Near my eyes. But oddly enough, I want them to continue. As long as they occur, electrical signals are reaching my muscles, so I'm happy to have them go on forever.

The most notable change has been in my energy level. For the last few months, I've been exhausted most of the time. I sleep 8 or more hours a night, but I wake up feeling like I didn't sleep a wink. My chest and abdomen, which are rather tight, seem to constrict my breathing and I sometimes feel short of breath. However a recent checkup ensured my diaphragmatic breathing is still intact. My "Forced Vital Capacity" is 113%, as it's always been, so that's good news. My doctor has ordered a sleep study to see if I have any sleep disordered breathing. I told him I don't care what the cause is as long as they can help me get some energy back. Honestly, some days I'm not sure which would be more frustrating: being paralyzed or having mobility and no energy to use it.

On the other hand, let's say my stronger right one, I am still alive. And my progression has been much slower than I had anticipated. Going back to my car accident analogy, where I imagined myself having been killed on this day one year ago, I have had 365 phenomenal days of life added to an already charmed existence. I can still walk and talk. I can still eat and drink and do most of the things I've always done. And most importantly, I have seen the arrival of my daughter, who is simply the most wonderful, beautiful, and magical human being I have ever had the privilege to know (my wife being a close 2nd of course).

So perhaps the future I had once counted on is no longer reality. But none of us is guaranteed a single minute of the future, and each and every second I have been alive, especially since my diagnosis, has been a gift. And while today is a somber day for me and my family, we are choosing to celebrate today as each of us should every day. Another day offered by God, by Mother Nature, or whatever forces you believe exist in our universe. Another day to drink and be merry. To love and to cherish. To be happy or sad. To live long and prosper. Another day to simply exist.

1 comment:

Anonymous said...


It's hard if not impossible to get emotionaly involved and attached to your plight when reading your blogs here. I know you dwell and think on many issues that most of us are fortunate to not to have to even deal with. When things get me down or I get upset, I can read one of your blogs here and think. Wow... I've got it so damn good. Really I do! I feel so blessed and fortunate. I guess we all have our blessings to be thankful for and life sometimes throws people a very unfair deck.

Here's an example, a doctor in my hometown recently passed away at age 41 of cancer. One of my friends, who graduated high school with him was breaking down to me about things and this is what he told me. He said I can't believe this, he never drank or smoked, he did everything right and now he's dead. I've drank like a fish, smoked like a chimney at various times in my life. Why the hell am I still alive and he is dead? He was a fine man, he always worked hard. Much harder than me in school, he's even a little younger than me too. I can't figure this? I'm like it's not your job to figure this out. It simply happens, life and death simply happens everyday. Bad things happen to good people every day and even good things happen to bad people. Children are born into this world sick, and nearly every day hundreds if not thousands die. These are all grim prospects, but there is always hope. Always... Hope comes from prayer, loving families support, financial aid, research, and whatever someone can do to help out.

It seems the world speaks of war every day. There is war in Iraq, war on terroism, world wars, holy wars and what have you. I have another proposal. If everything that is spent on war today in not just this country, but in all the countries throughout world how soon do you think we would find cures for various illnesses? I don't mean just from the money a war brings, what about the time and effort? I know I'm thinking of Utopia again, but it makes me realize all too little is being done in this struggle. I'm not necessarily saying there shouldn't be a war in Iraq, but I am saying there should definitely be a war against ALS, cancer, diabetes, heart disease, MS, and whatever else plagues humantity first and foremost. It's a shame everyone can't do right in first place, but I guess if that were the case there would be no wars in the first place.

On that note. Looks like I'm blogging and venting in your space here! :-)Anyways... Let me pose this question? What can I or anyone do to help you here? If there were a magic button I could press or a special pill I could give you Scott I would do it in an instant, but I have no such power. I am getting ready to make a pretty good donation to ALS-TDF soon though. I'm hoping this hurricane thing down south hasn't hurt the research contributions too much. I know 9/11 hurt things badly years ago.

P.S. I can't believe I typed all this without talking about your family. Man what a precious child you have! She's is just a doll! Great work to both you and your wife. You have such a gorgeous family. The photos of you all together, really look great. :-) I don't know who's idea it is for the poses you have together, but they are really neat.

I would have posted under my usual name Keith here, but I couldn't remember my password! Sorry it's been so long since I said something. I've been reading your blogs though all along. I was thrilled when your child arrived!

Take care and you are in my prayers,