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Independence Day

I am sitting in the sun with my cat sprawled at my feet out on the front porch.  Hummingbird just buzzed us and fireworks boom all around us.  Between charges, the chickadees cheep in the poplar over my head while other songbirds sound all around.  Today is Independence Day in the United States of America.  While my husband and I are born and bred Americans who have always lived within the bounds of our great nation, my household is opting out of the festivities and celebrations today. Perhaps with my decreased independence and increased dependence, I'm not in the mood to celebrate.

My household is affected by ALS. We feel like many of our choices, hopes, and dreams have been wrested away from us.  Instead of being a day of celebration our household seemed to take on the horrors of war.  F-bombs bursting in mid-air as my husband/caregiver and I verbally slash at each other.  We are exhausted! Unless we are destitute and piss what little money we have away, we do not qualify for any of our governmental programs which could help us with that caregiving that I so desperately need. I am unable to walk, barely able to talk, unable to use my hands, unable to toilet myself, unable to feed myself and my husband is just sick to death of picking up all the slack. He must continue to work full time to carry our financial commitments, and keep up the health care that we so desperately need.  We are working on a refinance to lower our monthly house payment in order to assist with caregiving costs.

Caregiving costs more than I made as an accountant making full pay!  It's fucking ridiculous! And now being on SSDI, we are left holding the bag trying to figure out how to make all of this work while also trying to do special things before I kick off and croak.  Don't get me wrong, there have been a few agencies that have really made a difference in our lives.  The ALS Association has really come through for us with the equipment loans from their closets.  They are so very generous and it really does help.  Our local ALS support group has really come through with the needed practical advice and special friendships that have made a very positive difference in our lives. Muscular dystrophy says that we fall under their umbrella and the people have been really nice but so far I have not seen exactly how they help us personally.

Aargh!  If we lived in another country I'm sure we wouldn't have the benefits that we have been afforded to realize by living in the good old USA. Sometimes it is just hard for us to keep a stiff upper lip in the face of such staggering odds.  It is so difficult to strive for more your whole life desperately trying to put money away for retirement and then to have the rug pulled out from underneath us In the face of this terminal illness. It is so very unfair to my husband, a hard-working blue-collar American, who is now destined for poverty because a disease hit his otherwise healthy wife.

Okay, so you think I'm a lousy American. I am still grateful to those who defend our country and give us what we do have, relative peace and security. But I am truly sick and tired of politicians raping the system and shitting on the middle class.  Some say that the true test of a society is to look at how we treat our sick and our old. I say if you take a look into that piece of our society we leave a lot to be desired. 

Long may she wave.



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