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 31, 2011

Post 27 - One More for the Road

For those of you unaware, May is ALS Awareness Month. This being the last day of May, I would feel somewhat remiss if I did not get one more post in during the month of May. For me, the month is ending on a particularly good note. On Sunday, we revived the tradition of our annual Memorial Day barbecue. This was a tradition that we started back when we are living in Franklin Park, New Jersey. We have had the BBQ every year we have lived in Chesterfield, except for two. The first year we failed to have the BBQ was in 2007, the year of my initial diagnosis. Since I had received my preliminary diagnosis from the University of Pennsylvania hospital in early May, I was not much in a partying mood, by the time Memorial Day rolled around. The other year, we did not have the barbecue, was last year, because I was simply in no physical condition to host a barbecue, and a little bit saddened by the fact. This year, the idea to have it once again, cropped up in my head somewhere around late April, but since it would have been physically impossible for me to do any of the preparation or work; I kind of let the idea just sit there. A couple of days later, as Tracey drove me to work; she suggested that we revive the tradition. I let Tracey know that I was somewhat thinking of the same idea, but it would have to be her decision since she was obviously going to be doing the majority, if not all the preparation and work. In years past, Tracey would handle the indoor food preparation and cleaning and I would handle the outdoor preparation and cooking, and my favorite part - the beer selection. This year, it would all fall on her. Half of me looked forward to the BBQ, while the other half felt guilty. I knew she was doing this work for me, more so then for her. We agreed that we would keep the invite list small, since we suspected that we might get a fair turn out, due to the ALS pity factor. We also agreed that we would consent to allow people to bring things to help us out. Historically, this has always been a no-no for our parties.

All in all, we had about 30 people show up. Besides the usual family members, we decided to invite friends that have been extremely supportive towards us since my diagnosis. That's not to say that I have not had a tremendous amount of support from a whole host of people, but these were some people that I felt we owed a special "thanks”.   In some ways, this was my coming-out party, in that, it was really my first large-scale, public appearance since the ALS Walk last November in Philadelphia, as well as my first public appearance in front of family and friends, using my power wheelchair (not my good power wheelchair mind you, I'm talking my $200 Craigslist special. I'll save my $20,000 wheels for special occasions). 

That's my new cigar smoking hat, bought specifically for this occasion 

I was not as nervous or hesitant in joining the party as I expected to be. I'm sure that had something to do with being surrounded by people I felt very comfortable with.  Of course, the beer didn't hurt either.  I had five beers that day (I only know that because someone else was doing the counting.  I lost count with my second one) and eight in total, over the three-day weekend. Those eight beers probably matched my previous two months total. In addition, I smoked my first ever cigar. What the hell do I have to lose at this point? I always thought I would look cool smoking a cigar and I was really getting tired of walking around with those pretzel rods in my mouth. I could also tell that most people there must have read my last blog post, especially the part about me needing to gain weight, since almost everyone came up to me, offering to get me some food and making sure that I had something to eat.

Overall, I had a pretty good time, and I'm pretty sure everyone else who attended, did so as well. Again, I can't even begin to put into words how much Tracey amazes me and how wonderful she truly is. From cleaning the house, to doing the shopping, to preparing the food, to cutting the lawn, and finally to setting up the outside and cleaning up afterwards, this barbecue never would've happened, if not for her. A big thank you too, to my brother-in-law Joe, who did all the cooking, my sister Cari who helped Tracey with the cleanup after, and to Yasser for my first cigar. Thank you to everyone who came, brought food and beer and wine and whatever, and helped me to continue celebrating Memorial Day, just as I always have.

1 comment:

  1. thanks for the picture of me with a spare tire around my waist! LOL Had a great time (and the kiddos did too!)