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.

Thursday, July 7, 2011

Post 29 - 4th of July, Long Beach Island (RIP Big Man)

Over the last several years, I have tried to stay away from the "why me" type of thinking. Admittedly, those thoughts occurred quite often early on, but in the last couple of years or so, for the most part, I've been able to move beyond that thinking. Actually, I have been more curious as to "why the F is this happening" in general, rather then "why" is this happening to me, specifically. To me, there is a difference. In attempting to stay away from the "why me" head game, I instead will frequently play a different head game, what I like to refer to as the "If I" game. Often, when I am alone, and my mind begins to wander, I will begin to think to myself, "What would I be doing now" or "where would I be right now,” if I didn't have ALS?

This past holiday weekend, Monday specifically, I got caught up in the "why me" game. We had gone down to Long Beach Island to my in-laws shore house to celebrate my father-in-law's birthday, which also happens to be the Fourth of July. Tracey and I have been down there every Fourth of July since we started dating. Starting last year, was the first year we did not stay over for a long, extended weekend. Between Tracey's parents and her siblings and their families, someone is usually down at the house, especially during this week, but because of various doctors’ appointments, Little League games, and other scheduling conflicts, the house was going to be empty for several days this week. If not for the ALS, we most certainly would have stayed down there throughout the weekend and into the week, at least. Instead, we drove down on Monday morning and returned home later that evening. As I sat on the deck Monday afternoon, overlooking Barnegat inlet, I began to think "why me." There was no use in thinking "if I" because I already knew where I would be and what I would be doing if not for the ALS. All I could think about was "why me." Unproductive to say the least. Here we were at a beautiful shore house, on a beautiful day, with a beautiful forecast for the week ahead, with free time on our hands. An opportunity that most people would thoroughly enjoy, and here it was, just out of reach for me, because of the ALS.

My in-laws, as well as Tracey's brother and his family, who were down at the shore house on the fourth as well, did everything possible to assist me and make me as comfortable as I could be. The simple fact of the matter is that the shore house, along with 99.9% of the rest of the world, is not conducive for somebody with ALS. "Why me?" The house is up on stilts (approximately 15 steps up to the front door), making it very difficult for me to get in and out. There is actually seven steps that lead up to a landing, before going up an additional seven steps to the right at a 90° angle. Because of the landing, I was able to take a short break and sit for a while, after completing the first seven steps, with Tracey's help. I was not concerned about going up the steps since I had practiced several days earlier in my office by walking up to the second floor, again with Tracey's assistance. The problem was coming down. In my attempt to come down the stairs at work, I fell backwards after the first step and hit the back of my head on a cinderblock wall. I don't think I ever hit my head that hard. Although I did not blackout, both my fingers and toes were tingling as though I had just received an electroshock. I ended up with a golf ball sized lump on the back of my head and one tremendous headache. I eventually ended up coming down the steps on my butt.

Should we choose to go to the shore house again, getting up and down the steps will continue to be a formidable task for me. Additionally, once inside the house, it is difficult for me to find a place that I'm comfortable. Currently, we have plans to stay at the shore house for about 10 days at the end of July into the beginning of August, Tracey and I will have to decide very shortly, how feasible that plan really is. Once I get into the house, it will be difficult, if not impossible for me to continually use the steps and to come and go as I please. Although I would have no problem sitting on the deck all day and doing nothing, I don't think the girls will have the same sense of enjoyment. The girl’s favorite activity when we go to the shore is of course, going the beach. Obviously, they can go off and do their thing and I can stay behind, but that kind of defeats the purpose of a family vacation. As much as I would like to go to the beach, the playground, the amusement park and any other activities that we typically do on our summer vacation, I would like to think that they would want me there with them as well. Again, I'm just not sure how realistic this is.

On Monday, I had posted on my Facebook page, the difficulty that I was having getting in and out of the shore house. Several people had responded, offering suggestions on how I may be able to get down the steps by recommending that I slide down, using various methods. Although I am very thankful for the suggestions and glad that so many people wanted to help, this unfortunately would not do the trick. First, I really have no way of getting down to the floor, except by falling. Second, once I slid down the steps, I would still have the same problem in trying to get up, which would probably be just as difficult, if not more so, than trying to walk down the stairs. Tracey and I are both convinced that there is an easier way to get me up and down the stairs, but we just haven't figured it out yet.

For a number of reasons (work schedules, kids’ activities, etc.), Tracey's brother and sister, and their families, are not able to come down to the shore house as often as they used to. We on the other hand, due to the flexibility in my summer schedule and the girl’s ages, have the freedom to come down to the shore house whenever we would like. In fact, if I set my schedule up right, we could probably stay down there for almost the whole summer. Therein lies "La Forza del Destino! In German, it's Die Macht des Schicksals" (Some random TV trivia - Can you identify the TV show associated with those words.  Click here for the answer.  The full line is at the end of the clip). A shore house at my family's disposal that we can’t use. Sometimes it feels like something out of a twilight zone episode.

In a way, ALS has contributed to keeping me stress-free and has saved me a lot of frustration, and perhaps a few dollars. Without the ALS, there are several home improvement projects that I would have undoubtedly attempted that are certainly above my skill set. Sometimes, on a nice day when I'm sitting in our living room looking out into the backyard and playing the "if I" game, I will think to myself that if not for the ALS, I would have built the girls a tree house.... if not for the ALS, I would have put in a paver patio in the backyard... if not for the ALS, I would've cut some trees in the backyard... if not for the ALS, I would've done some major landscaping all around the house. There is a chance that some of these projects may have been completed, if not for the ALS, but the end result surely would not have looked as well as it looked in my head at the onset. I also have a habit of severely underestimating, not only the skill level needed to achieve these tasks, but the time needed as well. Many a time, I have attempted a lot less involved home project in which I underestimated the time to complete by not hours, but by days. This defect in my thinking has also applied to cost analysis. Usually, my initial estimate for completing a home project is two or three times less than the actual cost, thereby increasing my stress and frustration, especially when the final product does not meet my expectations.

On rainy days, I will usually picture myself painting a room or cleaning the basement. Tasks that I can easily accomplish. However, on occasion, I will think to myself "you know, if not for the ALS, I bet I could have finished the basement." Like there was a chance in hell of that ever happening! That's not to say, I might not have given it an attempt. I probably would've spent countless hours researching. Paid many a visit to Home Depot and invested in all sorts of tools and supplies, and actually may have started the project (of course, underestimating the time, cost, and skills needed to complete the project) before realizing how far in over my head I really was. Eventually, I would have had to call in a professional to not only finish the job but to inevitably fix whatever I broke trying to do the work myself.

Some may think that I am torturing myself by playing the "if I" game, but to me it is often a welcome distraction and an uplifting experience for two reasons. First, I feel relieved, that I'm not putting myself through the stress, frustration and second-guessing over starting some of those projects. Secondly, that just because I can't do those home projects now, doesn't mean that I cannot torture myself in the future by attempting to do them, when I am able. Maybe we don't have a nice brick patio now or a finished basement (with my Man Cave), but that doesn't mean that we never will. For now, I can make my list of all the things I would like to do in the future, and if it doesn't happen this summer, then maybe next summer, and if not next summer, then maybe the summer after that one.

For better or for worse, I always try to end things by convincing myself that this is only temporary, that things will get better. That's the thought that I go to bed with every night, and usually the first thing I think every morning. I'm sure someday when I'm not down the shore, I'll be sitting in my backyard out on the patio. That is the power of fate!

1 comment:

  1. I know how you feel ;we had a house in South Africa and had to sell as it was not suitable for my progressive disability nor could I travel on a plane for 12hrs without being able to go to the toilet !
    These days I spend much time saying ,'Why me '? It's to be expected in our predicament though it doesn't change the situation,unfortunately.Keep trying to find a solution ;good luck