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.

Friday, July 30, 2010

Post 8 - George, ...I mean Darin, is getting upset!

Did you ever go someplace that you didn't want to go to, but you knew you would end up there anyway, but you do way sooner than expected? This happened to me yesterday. After helping Tracey, pack up the car for our trip down to LBI, and by helping, I mean sitting on my ass most of the time. I did carry out two or three of the smallest bags we had and I did supervise Tracey loading the car, but other than that, I can't say I did too much. Still, I was completely exhausted by the time that we left.

My view and inspiration for today's blogging and drinking.
Actually, I did help out a little bit more than that. I did help with packing up some of the lighter things around the house, unplugging most of our electrical equipment, such as TVs, computer, etc., and gathered up some of the little knickknacks like vitamins and cell phone chargers, and things of that sort. Needless to say, I was on my feet a lot. Like I have said previously, I do not wear my leg braces around the house. So there was some reason for my fatigue. Our original plan was to leave around 10:30 AM. It was about 1:30 PM when we left our driveway. It was a sunny, hot, humid day when we left. By the time we hit LBI it was a torrential downpour with virtually no visibility. By the time we got to the house and we unloaded the car (of course when I say “we” I mean, Tracey) the downpour had turned into one of those light refreshing summer rains. We had planned to go out Friday morning to do the additional shopping that we would require for the rest of the week. But seeing how the weather was not cooperating and the forecast for Friday was looking good (which they were correct by the way, it is beautiful down here today), I suggested that we head back to the mainland and do our shopping so we would not have to worry about it on Friday. That suggestion was only a minor mistake, compared to the bigger one I was about to make.

Since I had not worn my leg braces for the ride down to the shore I briefly contemplated putting my shoes on, so I would be able to wear my braces while we were out shopping. I guess you can figure out what I ultimately decided. Our first stop was BJ's warehouse to pick up the bulk essentials a family of four needs for a week. Although I had some concerns about how I would make out we did not have much to get, and as long as I was pushing a shopping cart I thought I would be okay. For the most part, I was. When we got back to the car I was feeling a little wobbly in my legs. ShopRite was next on our list. By the time we got the kids out of the car and got to the front of the store were the shopping carts were located, I was pretty much done. That's when it happened. When I got to the place where I knew I was headed, didn't want to go to and certainly didn't expect to get there this soon. At the front entrance of the store was a line of motorized scooters. I had three choices. First, I could go back out to the car and sit and wait while Tracey did a week’s worth of food shopping, with the two girls. Second, I could try and tough it out, using the shopping cart to help balance myself, and get the seven or eight things Tracey asked me to pick up, or I could suck it up, swallow my pride, bury my self-consciousness, and park my ass on the scooter. I entered the world of George Costanza (for those of you not familiar with Seinfeld, you may want to consult with a Seinfeld watcher to get the reference) and chose option number three. At first, I felt like an idiot because I did know how to drive the thing. It was very reminiscent of the first time I tried to drive a stick. After a few minutes, I quickly got the hang of it. The self-conscious thing, however, did not totally disappear. First, whether real or imagined, it seemed as though a lot of people were looking at me and in my mind thinking, why is this guy riding around on the scooter, he looks perfectly fine to me. After all, people are always telling me, either how good I look, or that they couldn't tell I have ALS or something to that effect. It got to the point, where I'm sad to say, when I had to get up from the scooter to get an item from a shelf, I kind of over embellished my weakness to make it obvious to anyone who may be watching me that I did in fact have a physically disabling condition. Talk about pathetic. Like it was anyone else’s business as to why I was using the scooter. Besides the perceived stares (and in an attempt to remain objective, I do believe that only some of them were real), I also want to point out how many complete a-holes were in the store yesterday afternoon. Some people were compelled to walk down the middle of the aisle; other people would just leave their carts in the middle of the aisle and walk away, while some people just stood still talking on their cell phone. Now I have been shopping before, and I know that this is often a frequent occurrence, but here's why I think things were different this time. Previously, at least for me, in all those situations, I was able to either make eye contact with the person so they would get out of my way, try and maneuver around them, gently nudging their cart if I needed to, or would just simply say “excuse me.” That always seemed to work when I was a 6'2" man pushing a shopping cart. It didn't seem to work so well when I was a 3 1/2 foot tall man riding a scooter. Additionally, a fair share of people either saw me coming down the aisle or looked right at me, and still made no attempt to move their cart or get out of the way. I have to admit that on more than one occasion, I came close to showing some people that I was still able to get out of the scooter and was still more than capable of knocking them down! In fact, at one point, I did play bumper cars with someone else's cart, and in true George Costanza fashion, kept on trucking without looking back. I have been told that shopping cart rage does exist, and now I can add one more diagnosis to my repertoire.

The second line I crossed yesterday was in asking people for help. As I have also stated in the past, asking for help is never been an easy thing for me to do, and that is with people that I know very well and trust. I guess, since I was already driving the scooter, I figured what the hell. Now the scooter is all fine and dandy for getting around but when you still have issues with your arms and hands it makes it all but impossible to reach half the items on store shelves. Thankfully, as I mentioned above, I was able to get in and out of the chair to retrieve the items I needed. This was true for all but one item, the bananas. Because of where the bananas were placed they were totally out of my reach and I had to ask a store clerk for assistance. But I was not done yet. I was also in charge of finding a dinner for the night. Ever since Tracey and I started coming down to LBI about 10 years ago we've always had this kind of tradition on the way down to the house. We would stop and pick up a pizza, some wings and some beer and sit out on the deck and have dinner. Since the kids, the tradition has kind of gone by the wayside, but whenever possible, we try and relive the moment. Last night, I thought it would be nice if I got some wings to have with dinner, problem was that I did not have the hand strength to squeeze the tongue's to grab the wings from the wing bar. Again, I had to ask for assistance.

Looking back on my scooter experience, as well as my assistance asking experience, I have to say that I'm not quite sure what to say. I feel very conflicted. One second I'm telling myself “this is all a pretty big deal. I'm slowly but surely losing my independence.” The next second I am telling myself “it's no big deal. I was able to accomplish what I wanted to accomplish and that is the important thing.” In some respects, I guess I am lucky in the sense that I have now crossed that threshold. I can better prepare myself psychologically and emotionally since I am no longer a stranger to the ideas of assistance, both mechanically and physically. I am sure I'll adjust, in time. Just like I adjusted to receiving the news of the original diagnosis, adjusted to not being able to write, button a shirt, or tie my shoes, and adjusted to wearing leg braces. For all of those scenarios, the adjustment was easier than I expected, but still tough to handle and to accept. Besides, if riding a scooter and asking strangers for help, is what's necessary to spend a week at the shore with Tracey, Sydney and Emily, then I'm all for it.

One last note. I officially began my vodka tonic trial (Refer to Post 4 from July 14, 2010) this afternoon on the deck and continued the experiment through dinner. So far, nothing significant to report. Tomorrow night, Tracey and I have plans for dinner. I plan on continuing the experiment with gin tomorrow. I promise to report out on my findings.


  1. I feel like singing "I always feel like, somebody's watching me..." or "paranoia strikes deep, into your life it will creep". Naw, just kidding, but you are funny...who knew? ;)