"It Brought Me To My Knees"....we have all said that at some point, but has anything really "brought you to your knees"? By this I mean in the physical sense....made you literally drop to your knees and cry or pray in anguish. I have been there and it is the most intense hurt that a human can endure. I know you are thinking that this happened when I heard TJ's diagnosis but it was at that time that I mustered more strength than I knew I had, there was no way I was going to let TJ see me as being weak at that point, he needed me strong and I was determined to be there for him.
What brought me to my knees was our government...to be specific...our Social Security Adminstration. Don't stop reading...this is not a partisen political rant. When TJ was diagnosed he was told that he could no longer drive because the 20 brain tumors could cause a seizure at any time. His job was a boom truck/crane operator so this meant that overnight we lost half of our household income and were faced with mulitple copays on a daily basis. We had insurance but the copays were about to add up quickly!
My first order of business was to get him on disability...the doctors gave him a year to live at the most so I thought this would not be a problem. I helped him to apply for disability and assumed it would kick in immediately. Disabilty payments aren't much but they are better than nothing. His disability was approved within two weeks of application....
Then.....I spoke with Social Security and this is how that conversation went:
Me: I received a letter that "TJ" has been approved for disability
SS: Yes, he has been expedited
Me: When will he receive his first payment?
SS: There is a mandatory six month waiting period
Me: Are the payments retroactive?
SS: No, after 6 months he will receive his first payment
Me: No money for six months? Did you not see that the doctors are giving him less than a year to live?
SS: Yes, I know, people die all the time waiting for their disability to kick in.
Me: Is there any way we can expedite this?
SS: No...6 months is mandatory, he will receive his first payment on October 20th
Me: Thank you....goodbye
Now, our income is cut and our expenses because of copays have gone up....WTF???!!!
TJ worked hard his whole life and this is the treatment he gets?!
An hour later TJ found me in our master bath, door closed ( I didn't want him to see me), curled up in a ball on the floor....crying hysterically...how were we going to make ends meet?!
Our own Social Security Adminstration "brought me to my knees" and let me tell you...it is an awful feeling. Not only is TJ very sick but now I don't even know if we can make our house payment and afford his treatments. They tell you that treatment will never be refused....BULLSHIT!! pay your copay or no treatment today!
I had a wonderful family friend that offered to step up and help TJ & I so I was very fortunate. I paid her back after TJ passed but I know not all are so lucky to have a special person help them like TJ and I were.
Nobody (until now) knows my reaction that day. When I should have been strong for TJ I was breaking down...when I should have been the one telling him that it was going to be OK, it was him telling me that. He was such a strong man through it all!
If you truly have never been "brought to your knees" it is my wish for you that you never will be. The pain lasts forever.....
TJ was diagnosed on March 13, 2009 and passed on October 25, 2009, he received his one and only disability payment on October 20, 2009.
We survived...no thanks to our Social Security Administration helping a very hard working man!
Am I bitter?.....yep, just a bit