THE BLOG
01/23/2013 10:31 am ET | Updated Mar 25, 2013

A Swan That Chose Fight Over Flight

They saw us early. Today I still think that was the first time in the history of medicine that a patient was in the exam room prior to his appointment time. I was with my mother and her sister, all of us anxious about the day's unknown outcome, but at least we were off to a great start.

Once the shock of being seen early wore off, reality set in quickly. We were in the typical exam room, cold and sterile in every sense of the word. My mom and aunt sat in the only two chairs, which only left the tissue paper covered exam table for yours truly. I will admit that it did feel odd being a 30-year-old man and having my mom and her sister (a medical professional herself) in the room with me, but I was thrilled that they were there to support me.

I could tell my mom was tense, sitting on her hands, unable to get comfortable or sit still for more than a few minutes. My aunt was far more calm but certainly uneasy as well. I remember looking down at them from the exam table wishing there was a way to put their minds and hearts to rest.

Our appointment that day was at Northwestern University in downtown Chicago. It was with a doctor with impeccable credentials. But let's be honest, who cares how many diplomas he has on his walls if he's going to give you terrible news. Before we even saw the doctor, there was a long list of specialists we would visit with that day. There was the nutritionist, the speech therapist, the shrink, and my all-time favorite, the physical therapist.

The physical therapist was a mousy-looking woman who I will never forget. When she entered the room, I was laying down on the exam table, as we have already been there for a couple of hours. "Hello" -- looks down to see my name -- "Kevin. I understand you're having problems with your wheelchair?" Now, seeing as I am 30 years old and, outside of some muscle spasms and some strength lost in my upper body, I am very healthy looking, I looked at the woman and started bicycle kicking. "I think you have the wrong room." Her face immediately turned bright red; however, not red enough to admit her mistake and leave the room. At this point, it was almost comical. Here I am, getting ready to be given a terminal diagnosis, and I feel like I am in the middle of a Saturday Night Live sketch. Fortunately, the uncomfortableness/comedic gold only lasted a few more minutes before she tiptoed out of the room.

After our comedic relief was over, we knew we only had the doctor left to see. You have to remember, we went into the day with one simple question: Do I have ALS? So after three hours, four different specialists and an insane amount of information, we still do not have our answer. I am so incredibly thankful that humor runs deep in my family. There is no question that our family's ability to be funny, even when it seems completely impossible, made those three hours fly by. Unfortunately, the next 30 minutes did not.

The doctor came in, a Rob Reiner look-alike, and sat down to give us our answer. It was clear, the doctor was a good man. It was also clear he was extremely long-winded. All that we wanted was a "yes" or "no." But I put myself in his shoes, who wants to tell a charming, successful, single, 30-year-old man he has a disease that will likely end his life in three to five years?

My mom finally cut him off in mid-sentence, "I'm sorry, do you think it's ALS or not?" He looked up, his hand almost covering his face, "Yes, it is ALS."

It might sound odd, or even unbelievable, but the first feeling I remember having was relief. It had taken nearly 18 months from the day I noticed my first symptom to get to that exam room. I suppose in the back of my mind, I always suspected or maybe even knew it was ALS.

The next thing I knew I was hopping off the table and saying, "Okay, now we know who we are fighting, let's beat this son of a bitch!" I still have no idea where that bolt of energy came from that day, I only know that it continues to grow in strength and brightness every day.

Two days later, my best friends created a team for an ALS walk. In two months leading up to the walk, we raised over $85,000. I was shocked at the lack of awareness around the disease that was supposed to take my life. I have always known I was put on this earth to do something great, and now I know what that is, and for that I am absolutely grateful. I choose to fight!

I am eternally grateful for the amount of love and support I received immediately following my diagnosis. The kind of words and gestures were so thoughtful and overflowing I honestly felt as though I was eavesdropping on my own eulogy. I have no doubt that it is because of the people I have surrounded myself with that I will overcome this great obstacle.

Months after the walk, I decided to start my own foundation, A Life Story Foundation to raise awareness and create action around this horrific disease by telling the stories of incredible human beings who also choose to fight.