"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 Administration. This is not a political rant, it is the cold hard facts that many don’t know until they are in the situation we were. 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 two thirds of our household income and were faced with multiple insurance 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. Disability 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!
TJ worked hard his whole life and this is the treatment he gets?!
An hour later TJ found me in our master bath with the 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 Administration "brought me to my knees" and let me tell you...it is an awful feeling. Not only was 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, but that is not true you either pay your copay or no treatment!
I had a wonderful family friend that offered to help TJ & I so we were very fortunate. I was literally borrowing against TJ’s life insurance policy since I had to pay her back after TJ passed. I know not all are so lucky to have a special person help them like TJ and I were. I have heard many stories of people losing their home while battling cancer.
I rarely talk about my reaction that day, because it was not one of my strongest moments and something I am not very proud of. 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 and is an unforgettable experience.
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.