About Me

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For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.

Tuesday, May 24, 2011

Post 25 - "Lucky Man"

I went to see the gypsy the other night, She looked in my palm looked me in the eye
Said you’re a lucky man

Some folks got fortunes some got eyes of blue, What you got will always see you through
You’re a lucky man

-Bruce Springsteen


Lou Gehrig (June 19, 1903 – June 2, 1941)

When Lou Gehrig gave his farewell speech, over 70 years ago, he began "Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth.” Although I have always felt that I have many reasons to be thankful, (beautiful, healthy children, a wonderful wife, a great family, dedicated, supportive friends, and a good job, just to name a few) I've never had reason to consider myself lucky, especially over the past four years. In fact, as life began to get more difficult in the past few months, it appeared to me, that any luck I may have had was beginning to run out.

The last week was a tough week for me on many fronts. For starters, the constant rain was no big help. Cold weather appears to be my biggest enemy (I can assure you the hot weather is not any friendlier), which was is closely followed by wet, stormy weather. Last Tuesday, I returned to St. Lawrence Rehabilitation Center for my power wheelchair fitting and test drive. This process began over 4 months ago, when I first went for my initial assessment. At that time my walking was becoming more difficult, and I had experienced several falls. I finally agreed to go for the evaluation, after arguing with the occupational and physical therapists at U. Penn Hospital for over a year. When I first walked into the evaluation, the physical therapist looked at me, gritted his teeth and rolled his eyes. He took a deep breath, and went on to explain that he highly doubted that insurance would pay for my power chair, since I was still walking. I could not believe my ears. I finally show up to do this after a year of debates with my clinical team, and now the evaluator is telling me that it is probably a waste of time. Well, after 4 1/2 months and at least two additional requests from the insurance company to my doctor asking for additional information and justifications, the power wheelchair has finally arrived.

Permobil C300
MSRP: $40,000
 Insurance pays: $23,000
My co-pay: $4500

Not bad for a convertible
Most ALS patients that I've come across on various blogs, forums and websites speak of their power chairs as a saving grace. They talk about them fondly, and look forward to getting them. They talk of how much better their life will be when they get one. For me, this has been the day I have been dreading for over four years. When I walked into the therapy room room at St. Lawrence, and saw this brand, spanking new, shiny black chair, with blue trim (I got to pick the color when the chair was ordered last January. I was going to go with the NY Jets green, but they had just lost to the Steelers in the AFC championship game several days earlier , and I was still feeling a little bitter, so NY Rangers blue it was) I almost lost it. I became very down and depressed. Although I tried to put on a good show for Tracey, I think she knew. As I sat in the chair, and the therapist and a representative from the company began adjusting the arms, seat, backrest, etc. I did my best to remind myself that I was not going to let this get me down. In all honesty, I think I did a piss-poor job of trying to remain positive, but I did a much better job than I probably would have gone a couple years ago. I kept coming back to, what were all those people so damn happy about? Deep down, I knew the answers. It would provide me with a greater sense of freedom, allowing me to go more places. It would provide me a greater sense of independence, since I would no longer have to rely on somebody pushing me. And most importantly, it would provide me with a greater sense of security, since I would no longer have to worry about falling. I also knew it would take an additional weight off of Tracey's shoulders for all of those same reasons. Yet, I just did not want to accept it. To me, this was the beginning of the end. I kept trying to tell myself that the battle was not over, and I still had a long way to go. I fought hard to remain positive. I was able to take the chair for a little spin, and we discussed a few more adjustments. After about an hour, it was time to come home, and I still was not feeling any better about it. The chair was going to be delivered on Friday.
For the next few days I gave the chair little thought. When Friday rolled around, I actually began to get a little excited about the chair. All those positive reasons for having chair, which I thought about a few days ago, had started to sink in. My first real experience with the chair occurred this past Saturday. Tracey and I were traveling up to Edison, New Jersey for the Abilities Expo 11. The Abilities Expo is a three day convention, where companies are able to demonstrate their products and services for the disabled community. It was here that I became truly enlightened. As we walked (Tracey walked, I rolled) around the convention floor, I began to realize how lucky I was. I saw dozens and dozens of children in wheelchairs, some as young as two or three years old. All, with smiles on their faces. I saw adults, in their 20s, 40s, 60s and beyond in wheelchairs, some who were obviously in wheelchairs, all of their lives. I saw numerous parents and caregivers, pushing wheelchairs containing children with severe physical and mental disabilities. I felt luckier about myself as the day went on. We met up with our new friend Dana (the ramp lady from Great Adventure) and shared a lot of laughs. Here I am, sitting in a power wheelchair, something I was dreading since the day I received my diagnosis, and I was feeling lucky.

Lou Gehrig's ended his speech that day by stating, “So I close in saying that I may have had a bad break, but I have an awful lot to live for.” I finally have some idea what he was talking about.


  1. well said, although for me the falls are the most terrifying. I tend to fall backwards and laying flat on my back on the bathroom floor last week when I fell over while taking a leak, well that was the first time I really felt like I'm dying.

  2. Darin, Such a beautiful, heart-breaking, inspiring post.... both Lou's words and yours.... Thank you!
    In deep gratitude for the friendship between our families...it was wonderful seeing the girls together last week...much love, Vanessa