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, August 2, 2012

Post 38 - It's Good to Be King... or Is It ?

Poor men wanna be rich, rich men wanna be kings,
And a king aint satisfied till he rules everything.
B. Springsteen

In case you always wonder what it's like to be a king, I can tell you:

I have not prepared a meal in years. In fact, if I want a snack I have someone get it for me. And like my meals, my snacks are fed to me. If I do not feel like it, I do not have to go to the kitchen or to the table. All food is brought to me. If I want more, I simply ask for it. I have not held a fork, spoon or knife for over a year. Likewise, it has been a year since I've had to drive myself anywhere. I am constantly chauffeured around. In fact, my feet hardly ever touch the ground. When not in a car, I use a blue "chariot" to whisk me around. While in my chariot, people will typically get out of my way, open doors for me and smile as I pass on by, apologetically excusing themselves for being in my way, whether they actually are or not.

I do not have to bathe my children, help them get dressed, or put them to bed.  I do not walk the dog or take out the garbage. When it snows, I do not shovel the driveway. I do not cut the lawn. In fact, I do not do any household chores, upkeep or repairs, inside or outside our home at all.  When they are being done, I am usually resting on my throne, a reclining chair in our living room, in front of a large screen TV. when I get up from my throne, the throne lifts up and tilts forward to make it easier for me to rise. Even then, my chariot is waiting for me close by. These are a few of the moments when my feet actually touch the floor. I do not have to tax myself by getting dressed. I am assisted with this task. I also have my hair combed and teeth brushed for me. I do not even have to wash myself. I am showered and scrubbed from head to toe. When necessary, my eyes, nose and mouth are wiped for me, as well as all points south.

I rarely go to see family and friends, unless it is a special circumstance.  If people want to see me, they will usually come to me.  People appear to be overly concerned about my welfare and are always asking how I am feeling and how can they help me.  When I complete simple tasks, people are often amazed and will offer me congratulations and undue praise.
At nighttime, I do not have to prepare for bed. Again, my feet barely graze the floor as I transfer to my bed. I then have either the bottom and/or top of the bed raised or lowered until I'm comfortable. If I choose to watch TV, the TV is put on for me. Channels are changed by my request. If I so request, desert will be served to me in bed.  When it is time for sleep, my face and hands are again washed for me. Things like blankets and pillows are brought to me to make me comfortable. I go to sleep when I want. It does not matter if the kids are already in bed, the dishes are done, or if any other chores are unfinished.  If the kids should awake in the middle of the night, I always remain in bed. I do not awake to an alarm clock. I am usually awoken at a specified time that I have designated. Some days, when I feel like it, I sleep as late as I want, sometimes as much as 10 or 12 hours and it is my choice if and when I want to get out of bed.

Although this sounds like a wonderful life, there are some downsides to being King within my kingdom.  In most kingdoms, the Queen will sit beside the King and reap the benefits.  Unfortunately, in my kingdom, the Queen is on call 24/7 and is responsible for making sure 100% of the tasks outlined above are completed almost each and every day.  My Queen is assisted, at times, by two princesses who also reside in the castle. Although the princesses are only 6 and 4 years old, they do not escape service to me, their King. They will often assist the King by operating the television, fetching food or water and serving it to the King, typing on the computer, as well as other tasks they are capable of completing. On occasion, the task required is more than to be expected from a 6 or 4 year old, or they may not always fully comprehend the task they are being asked to complete, but they will always try their best to assist the Queen in service to their King. They will sometimes tell the King that they wish that he could do for himself. Their wish is genuine, with no malice, and I, the King would like nothing more than to fulfill their wish, but right now, I cannot. I tell them that that I will try my hardest to fulfill their wish someday. The eldest princess has vague memories of the King serving his own needs and doing for himself, but the youngest princess has no memory of that all. The youngest princess will sometimes look at pictures of the King without his chariot, and looks perplexed, as if she does not recognize the King at all. Still, they do not complain, at least not as much as you would expect of princesses so young. This is one of the most difficult parts of being King but that is the way of life in this castle.

So what is it like to live like a King... it truly, truly sucks!

P.S.- I would like to thank my Queen, and she is truly a Queen, for the happiest nine years of my life.  Although I sometimes try with this blog, words cannot express how I feel about her.  She amazes me more and more each day, and each day, I realize how lucky I am to have her.

Happy 9th anniversary Tracey.  I love you!