It has been a while since I chronicled what it is like to be disabled and dying in America.
We have been very busy, we lost the house to foreclosure, having to vacate by Jan 29, 2011. and we have been scrambling to secure housing then to get ourselves moved. (when one of you is as sick as I am, well the whole process is slowed and painful.)
I am learning my way through the Social Systems, what a nightmare. the way we punish the poor. We make being sick, and disabled a crime.
Follow me ........
*****I am trying to get a permit to protest on the steps of congress anyone in here have a clue where to start, Cap Police say it is not them***
Any one who had read some of my past diaries knows that I am no slough, I loved my job, I worked and enjoyed everything about my career, except for a couple 2, 3 male chauvinist throw backs.
I got sick, no one can tell me how I got this rare disease, bastards, but here I am, interstitial lung disease, with pulmonary fibrosis. It is a death sentence.
Diagnosis was incidental, meaning there were no symptoms, I was diagnosed by and ER Doctor seeing something out of the ordinary on a chest ex-ray.
From initial diagnosis to certain diagnosis, a plethora of doctors poked prodded and did various biopsies. But the VAT Open Lung Biopsy at GW almost killed me, and in fact rendered bme disabled. I have tried to prepare my family for how things would change. Both emotionally and financially.
I would have less money, be able to carry less of the load. I had always gladly paid for my kids cell phones, car insurance, what ever I could do to lighten their load, make them more successful I did gladly. My mother was never able to help me, for either emotional or financial reasons. I did not want to be like her. Besides, I was making more money that I ever thought anyone would ever pay me. I could afford it. And it made me happy.
All of it, I helped as many people as I could, limited only by the amount of money I had to give.
As I look back now on what I did, or would do again, I would still play Santa to all those families in the shelters. One year My shelter called my (mine because it was where I stayed when I was homeless in 1985) and said they needed Christmas for three families, they no one else to turn to. I took my kids, we went to the Local Value City, and we bought gifts for each member of those three families, including Mom. That was the happiest Christmas I ever had, ever.... The dingle family gifts of all the other years, not the same rush….
It gave me great joy to give away what I could when I could. I don't know why, I just remember how Great it felt to do it. The look on my kids faces the Christmas I gave them each a new used vehicle, both had crappy cars at the time that hardly ran, they still drive those vehicles today. The way my daughter in law reacted when I handed her a check for 20,000, toward the, once in a lifetime, wedding of her dreams. Standing outside an apartment complex, watching three kids ride new bikes, that Santa left just outside the sliding glass doors on the patio. the tears on their mom's face, knowing that was the best Christmas ever. Going to the homeless camp under I-95 in Baltimore, with 4000 worth of Boxed and Bowed blankets, pillows, sleeping bags, and food, and just handing it out to the first who came along. Going back in January, to the 2 families with babies I had seen at Christmas. Taking Mom, felt safer than dad and kids all in my car, to rent a house. they had to share it, both families, but I paid the rent for 6 months. We are in touch to this day. Giving a bonus to one of the people who worked for me out of my own pocket because he was on the verge of being fired, he could not afford to live in Northern VA, on his pay. So I gave him a bonus and sent him off to work from home full time, in Texas, he still lives in the same house, he bought for his family. He still works from home too. He has never repaid me; in fact no one has ever prepaid me. I have never asked. I even had a small amount of money deposited in my mother's account each payday. She never mentioned it, and neither did I. My husband resented all of this, he never tried to stop me, just let me know his displeasure by mentioning the missing dollar amounts in the checkbook. I never deprived my family anything to indulge in my Gift Habit. He made sure the boats, jet skis and antique cars I bought him were not gifts, He would remind me that "you bought those for yourself, I never asked for any of it" But he sure did like to play on the toys LOL.
This went on for 15 years, most don't know the extent of what I gave away. I am not sure even I could calculate it. I don't think I want to either. It was, at least for me, pure joy, the most exquisite form of happiness, to give and not expect anything in return. Some of my gifts were anonymous, The face to Face left me uncomfortable, all the thank you Mame’s, etc. I could not articulate that I was doing this for me, sounded selfish, or that I felt compelled to help, because I had been helped. I remember thinking, my life could not sink any lower, and then a stranger left some money in my name at the shelter for me to get business clothes, and Christmas for my kids. I stretched that cash out into a shared apartment, still couch surfing, but paying rent! In 1985 I got 315 a month in welfare, and 150 in food stamps.
But I was not preparing myself, not at all. I was not mentally or physically preparing my self for how my life would change. How I would walk by a mirror and not recognize the woman staring back at me. The Old Woman with 100 extra pounds packed on by steroids, with the oxygen hose on her face and the deep, almost purple circles under her eyes. I did not prepare my self for how the Republican policies had decimated the social systems, and the level to which you had to stoop before there was any assistance at all. And that assistance is in the form of 16.00 YES Sixteen Dollars, a month in food stamps. No help with my medical insurance payments, of 239 a month, to have Medicare and prescription drug coverage, my disability check is 100 too high for any assistance, be it heat, food, or welfare, I am sorry there is no welfare, just emergency cash assistance.
Nor did I prepare myself for the humiliation, the degradation of my self worth by debt collectors for the "Gap" between what Medicare pays and what the doctors and hospitals charge. Disability Gap Insurance is 1600 a month, so that is not a possibly. The constant feeling that I need to apologize to each Social Worker for getting sick.
I used to benefit from the Bush Tax Cuts, now I am a liability.
I am tempted to get a tent and go camp out on the steps of congress, Or more likely on the path to the door most of them use daily, with a Neon Sign...
“Yesterday I Was one of YOU. Today I am sick. Why are you taking my Social Security away? Why is there no help for the sick and poor in this country? “
My husband says that would kill me, out in the weather and all that, and he may be right,
But it is my one last chance to give again, give of myself, my time, not just my money.
Would anyone notice one little old woman, with an oxygen concentrator sitting on the steps and in the gallery everyday?
Updated by one pissed off democrat at Thu Feb 24, 2011, 08:20:25 PM
****Need to figure out how to get a permit to protest on the steps of the Capital Building****