Take a "trip" to another dimension....
Living with ALS - Sept. 10, 2006
ALS is about Loss. Losing one’s body, mobility, independence, PRIVACY, communication, integrity, favorite foods, friends, husbands/wives, dignity, and on and on….My sister "Sarah" (from this point on-not her real name) has had this disease 18 years of her 48 years. My purpose here is to be a "conduit" and share my thoughts/experiences on a frequent basis as a way to allow people to get one view of a family and myself as we try to provide a somewhat comfortable way of life for my sister with ALS. I must add that I am fed up with the lack of awareness about how horrible living with this disease is which is why I write with the off-color language. I have to make this disease ugly. Also, the financial drain to a family is immense with many families wiped out as fundraising is not on par like some diseases such a Susan G. Komen cancer efforts. Every ALS family is in dire needs of funds for keeping an ALS person in some comfort requires many people, much effort and, alas, much money. I hope that I can turn on a pipeline for more funding for the research but also for the families........
I have languished for many months wondering if this is a good idea as I have watched other people write "tell-all" books and articles about other circumstances and though I will reveal some details, there are too many tiny details and personal details that I will retain for my journal. A journal that one day might become a book as I have kept many of the ugly details of how this nasty disease has affected me, my family, my work, my life. I have watched Mitch Albom take his Tuesdays with Morrie and ride a wave of popularity but what he wrote is much like a comic book compared to actually having lived with ALS for over eight years and been around it for 17 total years.
The huge sacrifices of my mother and father I hope to document as it is a sad thing to have witnessed and continue to witness. The loss of their freedom, the way their lives have revolved around ALS is heroic and tragic. At 75 yeas of age they should be traveling with their friends instead of daily getting Sarah up from bed, to the bathroom, and around eleven at night, putting her back into bed….oh and don’t forget the all-too-frequent possibility of having to awaken in the middle of the night to get her comfortable or a drink of water…
I told myself that I will have this site available for myself "at will" as I sometimes have a need to "write" down my thoughts as things get so unbelievably stressed and fucked up. My anger is demonstrated with four letter words. I make no apology about using them as all I am showing is my hatred and anger for having been exposed to the ALS filth that ALS is. I tell people that having been exposed to ALS is like having a slime of shit covering one’s self and soul. To get away from "it" takes time and the knowing of coming home to "it" is truly dreadful. Dread is such a downer and is very real as a destructive way of being.
