Monday, March 3, 2014

My Mother, Her Battle for Life and the Cyclical System of Health Care

My mother is 63 years young. My brother and I always called her The Giving Tree. She is beautiful, stunning and more intellectually brilliant then the vision off a cliff gleaming down on the ocean crashing against bright silver rocks. She is talented, creative and nothing short of incredible. Becky took her life by storm, raised two children on her own, opened a company and quickly rose to be the leading female entrepreneur in this country. She started the staff leasing business (which she named after her children, Heatherton), posed on the covers of the fancy magazines, dined with the politicians, shook hands with Oprah and did nothing but succeed at everything that she touched.

My mom, Becky, made an easy decision in her youth that her children would not have a childhood that even remotely resembled her own. Becky, full of steam, chugged forward every day of my childhood no matter how tired, sick, frustrated she felt. Mom worked around the clock, 14, 16, 18, 20, 22, 24 hour days if she had to… whatever she had to in order to make her dreams come true. Her dreams were simple, 1. Her children would receive the best education possible no matter what it cost. 2. Her children would have a wonderful home to call their own. 3. Her children would become the kind of people that would be giving, thoughtful and successful in the world. 4. Her children would attend college and graduate. 5. Her children would be successful on their own. Lastly, number 6, her children would be good people. She shed every leaf off of every one of her branches, lost strength in her trunk, but she would never, ever stop giving.
My brother and I are both adults now, me being the eldest. We have successful lives, dreams, vision and we are always helping people, and taking time to grow within ourselves. My mother’s success provided her with her 6 dreams to come true, but not everyone got their wish.

I don't get it! I just don't get it. I am sick to my stomach every single day and am plagued by the overwhelming frustration of it all.

My mother has 2 rare blood diseases, had a bone marrow transplant and has leukemia. She also has a lot of related graph versus host issues from the bone marrow transplant and a host of other medical issues.

She cannot work, due to the medical issues.

Thus, she is dependent on the very small amount of money that the state of Indiana perceives as just above the poverty line.

She cannot get affordable health care because of her pre-existing conditions.

Thus, she is forced to have a spend-down, meaning that she must first spend $1,500 of her own money before the insurance will cover anything.

However, she does not receive enough money from the state of Indiana to afford her spend-down.

She must take all 15 of her medications, or she will die.

She cannot afford the $1,500 worth of medications.

She has to pay rent, for she has to live somewhere, but she cannot afford to pay rent,  because she has to take the medications that keep her alive, that she cannot afford, because she cannot have health care because she was struck down by her own body, not by a crime that she committed.

She cannot breathe because the pain is so bad. When she cannot breathe, she gets infections in her lungs and she gets sick. She can’t go to the doctor because that is more money on top of the $1,500 for her medications that she cannot afford so she spends days crawling across her bedroom floor trying to reach the bathroom as she is aspirating on her own vomit, but she can’t go to the doctor since she can’t have insurance because he body waged a war that our country won’t help her fight.

My mother cannot walk, now, because the pain in her legs is so fierce that she must rely on a walker. But, she cannot use the walker because her hands have lost all strength and she is supposed to have surgery on them, but that of course costs money that they health care won’t afford her and the great state of Indiana surely will not care about.

Due to the pain, she is breathing so erratically that she is back to being on oxygen all of the time, when she can get to it. She falls a lot and she bleeds, and bruises. She has such extreme pain in her legs that a phone call home is one that near breaks me in two and leaves me for dead. She is panting, moaning, seething in pain. I cannot bare it. My heart cannot manage her utter desperation and pain. She is my mother, she is my mom, she is my mommy, she is the one that held me in her arms and promised to breathe life into me at any moment that I may not be able to do so myself. She is my mother.

My mother is suffering and there is no help? How is there not a health care provider that will assist with this awful and torturous situation? My mother is brilliant, kind, generous and would give you her last breath if you needed it.

The health care system forces her to pay money that she does not and cannot have. The state will not give her enough to live on and to have the medical care that she requires. She will die without the medical care and she will die trying to maintain having a place to live and the medications to keep her alive.

She has turned to driving for a company, basically a taxi service. She moans when she moves because the pain all over her body is so excruciating. She must use the walker to even get to the car. She can barely move her legs as much of her pain is centralized there. Remember, her hands also have no strength. She must operate a stick shift car on the icy streets of the storm ridden Indianapolis for no less than 4 hours a day, which means she is driving for 8 hours a day.

I beg her and I plead her to stop driving in her condition and in the condition of Indiana, she says that she must earn the money. I beg her to talk to the doctors to appropriately treat her pain, the pain medicine costs money, too. The doctors refuse to help her find a way where she could possible afford the medications that they prescribe. She begs them to wait to order the most expensive ones until the spend-down is over, but they refuse, and she must find the $200 for one prescription that will last her 28 days.

The state of Indiana won’t give her more money, as they already give her less than her spend-down. She has to pay the spend-down every month in order to get the medications in order to live. So, while near cripple, she is driving around in snow and ice storms trying to earn money to simply stay on this planet and yet, there is no help? There is nothing that can be done? There is not one avenue that my mother can utilize to help her out?

I spend my entire day with a knot in my stomach and scared half to death. I am not ready to lose my mother to a car crash because she continues to drive for this company because it is the only income that she can have or else she won’t get her money from the state. I am not ready to lose my mother because she cannot afford the medications that she needs in order to stay alive.

This woman, my mother, she is the woman that met a woman at the drugstore one cold afternoon in Chicago. Somehow the two of them began to talk, my mother in her fur coat, and the woman in her near rag clothing. They shared stories and they exchanged numbers. My mother came home and said that we were loading up the car and going to a friend’s house. We did not know where we were going. When we arrived, there was a tree strapped to the top of the car, a box of decorations and trunk full of presents. Apparently, her new friend had fallen upon hard times and were being evicted from their home, had no money or food to feed their 5 orphan children. My mother promptly went to the Christmas tree lot, bought a tree, decorations and then proceeded to the store to buy gifts for all of the children, clothes and food for the mom, and a box of toys from Santa. We spent the evening turning their dismal home into a joyous celebration with decorations, music, laughter, hot chocolate and love.

That woman, the one that stopped her entire life on Christmas Eve to make another family feel less pain, even if only for a moment, that woman is my mother. That woman is the woman being denied health care, medications, money and all of the necessities to keep her alive. I am not ready to lose my mother because there are no systems to help her. I am not ready to lose her at all.

How I ask you, how, just how is this even possible? How is it that we live in world with a woman like my mother and in a world where there is no help for that very woman, my mother. I am not ready to lost my mother to a failing system, I am not ready to lose my mother at all. 

Tuesday, December 10, 2013

h.e. outlaw's silo: the funeral.....

h.e. outlaw's silo: the funeral.....: At 11:00 am this morning we laid to rest a 13 year old boy. He was a young man that felt so alone and struggled with such a vast amount of e...

h.e. outlaw's silo: Day 4 ... the suicide

h.e. outlaw's silo: Day 4 ... the suicide: I slowly opened my eyes this morning and took a deep breath. I thought back to the last three days and glanced at the red string around my w...

h.e. outlaw's silo: Day 3 .... the suicide

h.e. outlaw's silo: Day 3 .... the suicide: I look down and there is red string tied around my left wrist.  Since the suicide of a middle school boy last Saturday I have been doin...

h.e. outlaw's silo: day 2...the suicide

h.e. outlaw's silo: day 2...the suicide: I returned to the school at 7:45am and I could smell the desperation in the hallways. Each child and adult that I walked past had an empty a...

Monday, December 9, 2013

h.e. outlaw's silo: the suicide.....

h.e. outlaw's silo: the suicide.....: Today has been an especially long day. I received a phone call last night (Sunday) from a colleague. I was informed that one of our 8th grad...

Sunday, December 8, 2013

A Little John with a Little Wish.... heartbreaking, ... but a moment ofhappiness is possible

This story had a good beginning. A beginning that lasted five years, then something happened. Something so intense and overwhelming that stripped this family of daily life, routine, hope and all sense of the world. I want to share their story because this story can happen to any family. It has happened to so many families. It will happen to more families. A story of one family allows us the opportunity to provide support to many, to help when it happens, and to bring a dream and solace to this one little boy. This story is close to me, for he is my neighbor, my friend and a child that has brought light to everyone around him, until one day when he couldn’t.

Little John is five years old. He is smart, curious, hyper, and full of love. This child has more energy than my five young dogs combined. Little John uses his physical energy by hopping and jumping, running, dancing and making everyone happy. Little John has a heart that beyond that of any living being I have met. Last Christmas (at age 4) he saw a homeless man on the street and told his mom that he would give up all his toys for Christmas so they could bring home the homeless man and give him a place to live.
Every day when I pull into my driveway, Little John would be in his front yard, run to me and scream Header! He would jump into my arms and ask how my day was. No matter my day, it became amazing in that moment.

 Then one day,…… Little John wasn't there.
I knew that he had a cold. I knew that his mom had taken him to the doctor. The hospital sent him home twice and said that he had a virus. I walked to his home. He was on the couch. He was blue, lethargic and barely unable to communicate.