One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012

Saturday, January 14, 2012

Disability Shackles Finances

Part of the stress that creates spiritual shackles in the disabled is financial issues. My family is one of the lucky ones because we do have medical insurance. However, with medical insurance included the expenses for my family that have been OUT OF POCKET equals $18, 855.15 for the tax year of 2011.

I shudder to think what my trip to Vanderbilt is going to cost my family.
Now, just think what eighteen thousand dollars might do for you and your family? This year we literally drained the majority of our retirement savings in order to pay medical expenses and to keep us financially above water. Right now, my husband is taking the one car we have paid for to sell so that he can then take the car we haven’t paid for and trade it in for a car with a smaller monthly payment.  We are going to go to a one car household just to try and save money.

This is a big deal. I have several doctor appointments per month to get to not to mention appointments my son needs to get to. There will be after school activities he won’t even ask to participate in because he will know the stress it will cause us to try to figure how to get him home. Going to a one car family is going to make us depended on public transportation, which in our suburban area is sparse, and friends.  Even that will make the entire task difficult to manage.
What makes this worse is that I am trying (and have been trying for YEARS) to get government disability. The problems partially lie in the actual way in which you go about getting disability. The process is slow and can take up to five years to complete!!!!! And if you happen to be unfortunate, as I am, to have a genetic disorder that is rare and isn’t listed among the medically “accepted” disabilities, you have a serious fight on your hands.

Now I don’t want disability so I can go live the high life, mind you. I would like it to balance out the 18K a year I am losing to the medical industry.  I want to buy the shoes my son needs and maybe a more work pants for my husband. It would be nice to be able to buy some books for myself without guilt and no based upon the sticker price. It would be fabulous to be able to save up money for Yule AND DragonCon so that we can go to this event and show our son the time of his life.  These are little things that make a life something than other survival. They give memories and create and strengthen family bonds. My husband and I both try to make up for these financial hurdles we face and find it heartbreaking that as parents we know our lack of funds is limiting our son’s life experiences.
When people talk about health care in this country I readily admit, I don’t know what the answer is to this crisis my family is actively embroiled in. I do know that right now, the hope that I can get disability is the only thing that is keeping my provider oriented husband from losing his mind.

And before some you judge my family harshly for being financially unstable. I will point out that we have NO credit cards. Are debts are limited to three things: car payments, student loans and medical expenses. Everything else we owe is directly related to normal living expenses and is paid for with money we have on hand. We have a budget that we try to stick to and often have to finagle in order to cover medical expenses. Our greatest problems have come in direct relation to trying to provide for our son. Wanting to see him on school trips and doing special things has become the greatest guilt my husband and I experience. My illness causes my son to suffer. When he was born, I promised that no matter what I would let him buy any books he asked for. I feel strongly that exposure to ideas, especially the written word, in the electronic age is crucial. Unfortunately, we find that we sometimes can’t keep this promise because of the choices we have to make.
I worry that he has nice clothes and I can pay for the dermatologist he needs. I feel bad if I spend money on something for myself that isn’t related to my medical condition and all the while I watch my wonderful husband struggle under the worry that he is not a good enough  provider.

I think sometimes my spirit crumbles simply because such a heroic honorable man bears this weight upon himself, holding himself personally responsible for the financial problems in our lives. My husband who has a fabulous job that is steady and pays well, continues to feel as if he is letting us down. Watching him get defeated about money matters simply feeds my own guilt because how can I not believe that we would be better off if I could force my body to work better and bring home a paycheck of any kind?

My husband sees himself as a Warrior Priest. He honestly believes that he is a reflection of the Stag God to my son and I. His job is to hunt, gather and provide our needs and even some desires. Yet how can any warrior fight against a dragon without all the proper armor and shields? And no matter the time and energy I put into encouraging him to understand that he is still a man that rises above most men. I still see red eyes after our son has asked for something reasonable, is denied and bravely down plays his own desire for the very thing he has just asked for.  We both know that our sweet son waits until his shoes has holes in them to tell us he needs new ones and even refuses to mention he is out of his dermatology medications because he knows they are very expensive to buy.

Watching my husband priest  turn his head, cough and try to ensure that our boy doesn’t feel any worse than he already does for asking, shackles my spirit just a little tighter every time.

Whenever you have need, and better it be when the moon is full... The Charge of the Goddess, Dorieen Valiente modified by Lydia M N Crabtree 2007

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