And Here’s Why

As we drove around in our new (Toot Toot Chugga Chugga) Big Red Car Van the other day, Fehmeen asked me the following question: If you had to assign a number to the life you are living right now, with 10 meaning absolute perfection and 1 representing overwhelming despair, what number is your life?

I mulled it over in my head for a few moments and when the noise of traffic had diminished enough for me to audibly speak over it, I announced to my wife of three years that my life was currently an 8.

She nearly drove off the side of the road when she heard my answer.

And since my verbal capabilities are being bested by my sixteen-month-old daughter these days, not even Fehmeen knows how I arrived at an 8 for my number.

First of all, my having a progressive and terminal (and as yet cure-free) disease like ALS immediately drops my number to a 2. I can’t lie to you; having to rely on everyone around  me for every single thing I need pretty much sucks.  Mix in extremely limited mobility and a near-complete loss of speech with a typical post-diagnosis lifespan measured in years not decades and I believe that I’ve justified that score of 2.

However, I added 1 to my total for the talented and loving team of specialists I see on a weekly basis. Kind and nurturing souls like Jen for acupuncture on Mondays, Dr Ken for chiropractic on Tuesdays, Robin for physical therapy on Wednesdays,  Morgan for hydro therapy on Thursdays, and Charles for medical qi-gong on Fridays help keep my rapidly deteriorating body humming along as smoothly as humanly possible.

Next, my number increased by another digit thanks to the generous outpouring of support of the La Entrada parent/student/colleague community (as well as my family and friends) which helped us convert our bathroom into a fully accessible work of art.

I added 1 to my number for all the selfless and supportive friends that have rallied around me and my four wheels. Friends like Dan (thanks for the awesome looking DVDs), Rob (I appreciate your stories and for the fact that you still treat me the same way you did before all of this), and the Hen (I enjoy our trips to the beach, the movies, the club, and the hospital) always succeed in brightening up my day.

Then, I bumped up my total by another 1 for my ever-present family, especially my Mom and Dad. Although I don’t excel at showing it as often as I should, I truly appreciate all the things you two do for me. I love you guys.

Next, I increased my number by an additional 1 for the force of nature that is Fehmeen. She holds my hand when it needs holding, encourages me when I need the encouragement, and kicks my ass when my ass needs kicking. I am the socially presentable person you see on a daily basis in no small part due to her diligent and tireless efforts.

And finally, I added a final 1 to my total for my beautiful baby girl Emma. It is her face and smile and voice and spirit that I wake up to experience every single day. Watching her grow up in these first sixteen months of her life has personally motivated me to be around for at least two-hundred forty more.

And that’s why I’m an 8.

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