ALS, age, materialism, and me.....

“What looks like the end, becomes another beginning….” On the 5th anniversary of his prognosis…Stephen decided to go on a respirator. He had ALS…and a camera crew had followed him for over four years. The show, “So Much, So Fast” was on PBS last night. “Time is relative, the faster you move, the slower it goes.” –Einstein Watching Stephen’s family deal with the new mission that stood before them, and seeing how each individual member of the family responded, makes me wonder about my role in this fight. You see, when I was first starting grade school, my Aunt Wave was diagnosed with ALS. It did not take long for the disease to begin to rob her of her joy. My aunt wrote a note to her family, brought a gun into her bathroom, and shot herself in the head, while she still had the control to make and carry out the decision herself. Many people might not understand the choice she made. I think her sister, my Grandmother Colleen, and their mother, understood all too well. Wave and Colleen watched as their brother Cliff lost all mobility from the disease, many years earlier, and eventually, as my grandmother describes it “died a horrible death”. That is the only thing my grandmother has said about any of it. I have never heard her talk about her brother and sister, and now that her mom has passed, my dear Great-Grandmother Rose, she hasn’t mentioned her much, either. Of course, I do not get much of a chance to talk with my grandmother, with her being in Colorado, and me being here in Michigan. I worry about her. She often has a horrible time with anxiety and depression. She cannot work or drive because of it. Her daughter, my aunt Terry Lee, (yes, you’re catching on, Colleen, Rose, Florence, Lee – Florence being my other fabulous Great-Grandmother, mother of my grandfather), lives 20 minutes from her, so she will sometimes take her shopping, or to the doctor’s office, or just stop by for a visit. My father, unfortunately, is not so good about stopping by. That’s just kind of how that family works, they seem to be extremely self-serving, and…cold. I wonder how my mother ever fit in with any of them. I’m not so sure she ever did. I’m not so sure anybody ever has, even the very people that make up that family. The funny thing is I still absolutely adore all of them. Another good thing, I guess, that will come from not being able to have kids of my own...I will not pass this deadly gene onto them. My brother could have it, and my nephew could have it...who knows, I could have it. I will not drive myself crazy wondering if I do. I feel compelled, however, to have a more active role in the fight for a cure. My older sister's birthday is today. Deana is 35 years old. That seems totally crazy to me. When did she get so old? When will I stop thinking 35 is old? Probably when I turn 35. No, then I will probably think it's older than ever. I think 27 is old. The world tells me where I should be at 27...married, graduated (maybe with a Master's Degree by now), with one kid and another on the way, a house in the suburbs and a dog name Murphy. My friend Lindsay had a dog name Murphy, it only had three legs. Sometimes it would get loose from their yard and run to the high school to visit her. She would be so embarassed because everyone knew it was her dog...I think it was the only one in town with three legs:) Anyway, I don't think there is anywhere I'm supposed to be right now. The world bombards us with images of the American Dream. I look around me and see images of stressed out teenagers or twenty-somethings all striving for the same dream, not realizing that right down the street are people who have stopped dreaming altogether. I find myself more and more uncomfortable lately with the stuff that I have, and the life that I lead. Mother Theresa's feet were deformed. Did you know that? They would get boxes of shoes donated to the people of Calcutta, and she would dig through the box and find the worst pair, so nobody else had to wear them. Her feet were deformed from years of wearing bad shoes, or no shoes. My feet are already pretty ugly...but not because of a giving spirit. It is time to act. I'm not sure what it is I'm supposed to do, but that won't stop me from doing something. I can start small, start here, in this town. It will start with shedding my life from all the "stuff". It's kind of funny...I usually look around at my stuff and feel bad that I don't have very much, now I realize it is not a lack of stuff, but an over-abundance of stuff that is making me uncomfortable. Now, just to come to the realization is not enough, it's time to act. I am currently reading a couple of books, and both have compelled the same thoughts within me. The first is called "The Irresistible Revolution". The second was written by a friend of mine...he was traveling across the country with a backpack, and nothing more...there's obviously a lot more to it than that, and I'm sure I'll reveal more as I continue to read...but one excerpt spoke to me in the same way as "The Irresistible Revolution"... "...But more than all this, the joy and value of living out of a pack stemmed from the austere limitation of available space. Nagashana was forced to carefully consider the importance of each item that went into it. There was no room for the usual trivia and trifles that fill and eventually overtake the average American household. Nagashana had often heard people complain that their space was so cluttered that they didn't even have room to think. Living out of a backpack ensured, at the very least, plenty of room for that. Yet Nagashana took it even further than this. He remembered the teachings Jesus had on the subject of possessions: "Lay up your treasures in Heaven, rather than earth; for where your treasure is, there will your heart be also...If you would be perfect, sell all that you possess and give the money to the poor." Nagashana knew that these words were not about the importance of being a charitable person. They were a warning: He knew that possessions will eventually do the possessing; master will become slave, and a path will be forever lost. Shackles and chains, he knew, could have such alluring forms...cars, stereos, televisions, electric blankets, secure jobs, credit cards, cellular phones, satellite dishes - each a link binding and burdening until we all become like Marley's ghost: a cold sould trapped eternally by luxury and wealth...For him (Nagashana) consciously limiting his material goods was an act of spiritual training as important as meditation, study of sacred texts, or worship. The lightness (in weight) of his pack was directly proportional to the lightness (in luminescence) of his soul." - "A Handful of Dust" A Novel by Marc Beaudin http://www.myspace.com/crowvoice You know, for a guy claiming to be more spiritual than religious, I would say he's got more of the right idea than many Christians I know. I keep receiving this same message over and over and over and over again. You think God's trying to tell me something? ;) I have to head off to rehearsal, to play two amazing characters...an old rabbi (yes, an old man) and a homeless woman from the Bronx, who many say, is believed to be a prophet in the show...seriously, could I have been any luckier with this show? I was just cast in a Neil Simon show, I get to actually play a normal 30-something woman. No one is really normal, though, she will have a story to tell and act out just like all the characters I've been playing all along. At least I won't need to contort my face or my body for this one...I'll just need to dig deep within myself and find her.