It's a common mistake almost everybody makes, the assumption that everything is going perfectly or great or even relatively good when your friend, co-worker, or acquaintance keeps a smile on their face
It's not just a common mistake to keep what's out of sight out of mind. It's human nature. It's a protective mechanism.
How difficult would life be constantly wandering around with the knowledge that each and everyone of us is suffering?
It would be overbearing, but through life, I've discovered some undeniable truths, and among these truths is the fact that everyone has had something happen in their lives for which they have become ashamed and won't express their shame over fear of repercussions such as judgement or punishment.
Often with me people assume I'm healthy because I've managed to care for my son by bringing him to and from school, playing with him in the afternoon, attending basketball games, etc.
They see me doing these activities and base my entire life on the view of a few moments. These moments reflect the best of my life. When truth is I, and so many others, run and hide under the covers when we become sick, trying not to bother anybody, making ourselves as small as possible, not wanting to bother anybody with our issues.
What you see is strength shining through. I hide the most difficult aspects of my battle so others will not fear what may come, but it's important to know what will likely cross your mind.
I'm doing people a disservice if I'm leading you to believe that what I do, all the medications, surgeries, and therapies, is easy and I'm not crumbling inside.
I've never written about the thoughts I think when I'm at my lowest, my most desperate places in my life. I'd hoped this would be a space where I could share openly my trials and tribulations so people could understand how difficult a disease this is to everyone involved, and then integrate this understanding into their own lives.
But Everyone has been touched by my disease and many recoil in horror at the thoughts that cross my mind when I feel my hands are tied.
I didn't anticipate the emotional responses. It was never my intention to hurt anyone, But it's important all of you know to prepare yourselves, should you ever be in my position and realize you are not alone, you can find support, and your thoughts/feelings are normal for the situation.
First, years ago, when I saw what little my insurance company would cover and how it could destroy both our financial lives, I tried to legally divorce my husband.
Being unmarried, I would be destitute and have the option of medicaid.
My husband would keep the assetts.
Our life wouldn't change.
We'd remove a legal label. No hospital or insurance company could ever take our home. We could survive off J's credit with assistance from my parents.
In the USA, the sick can't afford to remain married. We fight for equality for all, the right to marry. I want the ability to stay maried.
This is the first place the desperate mind goes in a health crisis, well, maybe it's the second.
The first most common thought may come as a shock. It didn't cross my mind. I was fighting a 90% curable disease, but that first clear thought is usually suicide.
After the rushing questions keep going through your head for so long: "how sick will I become?", "who will take care of me?", "what kind of burden will I be?", "how will i pay for this?", and "what will I lose?" a period of calm settles in when the realization that "yes, I can have control over this disease, this body." hits.
We stayed married.
For whatever reason, maybe J didn't like the lie, maybe he really wanted to stay together, or maybe he was scared once the divorce went through I'd go "ha-ha, I'm out of this now." and run away, either way we've stayed together through our suffering.
With this option gone, I looked to what I could do independently.
I thought about dealing my meds but morally couldn't.
But then again, if I were to get caught, the state, government, and your tax money would fund my health care. I'd never have to call another insurance company or cry because someone is trying to send me to claims. No, those claims go straight to the pockets of other middle americans. I'd even have a full time nurse.
I tried to work odd jobs for my dad, writing, advertising, making art, in hopes to survive comfortably without the guilt of bankrupting my family, but my disease always made these endeavors impossible.
I'm just too sick.
Substitute teaching? No, sick risk.
Selling online? I can't lift myself to the computer.
With each relapse, with each new treatment requiring me to spend tens of thousands of dollars to go to Boston or New York or Cleveland, I find myself hiding in the bathroom, tears in my eyes, staring into the air, paralyzed by fear about what my next step will be, will I survive and can I afford it.
More often than not, 2/3s of the time, the answer is no to the latter.
I take the most convenient affordable treatment knowing that better is out there.
If the cure for cancer existed, and it may, in the form of customized vaccines, personalized chemotherapy, and hyperthermic radiation, I can't afford it.
We've reached the point where the hypothetical health question we have all been asking: "If someone found the cure for cancer would anybody be able to afford it?" can be answered. That answer is no.
I'm interested to know how many others forgo lifesaving care due to cost.
I know I'm not the only one that could die due to this.
And just when you think you've hit your very lowest, you believe anything and everything awful that could happen to you through the medical billing process has. After you feel like you've been racked over the coals and barely missed losing everything, another crisis comes, a hook to the jaw from your blind side.
In my case it came in the form of a letter from my Long Term disability company, Reliance Standard, stating that I needed to supply them with my dependent's social security award letter. They requested this after 3.5 years of sending payments along with the threat that anything I've received for my dependent from social security will ned to be repaid or sent to claims.
They make a mistake and don't request a piece of paperwork from Day one and can sue for that money back 3.5 years later.
The company had been trying to purge me through out my illness by demanding evidence, paperwork, and signatures from physicians every couple weeks. Failure of one doctor to comply would threaten my funds, even if I saw that Doctor once for a consult.
Their demands ere impossible to maintain while undergoing a bone marrow transplant, bu I was adamant they would not purge me.
I had paid for the service. I was entitled to the service. Reliance Standard was paid to support me in the event I became sick when I did they made it increasingly difficult to meet their demands.
I ignored their request for access to my social security awards.
I consulted a lawyer who said this is common and perfectly legal, my only recourse would be to set up a payment plan.
A payment plan?? I can't afford my medications! I can't afford my dog's medications!! I can't afford anything and it's legal to sue me for back payments due to a paperwork oversight?
I hear this is legal, but moral? NO. Ethical. NO. Unconstitutional? I'd say yes, and fight tooth and nail to prove it.
Who knew the sick would not only be denied by the company's that they have paid to protect them, but also force to repay those that should be providing financial security during times of need.
That is what I've paid for.
Instead, I received a notice saying failure to reply within 15 days would be cause to close my case and send the assumed amount I owe to claims.
CLAIMS? They don't even have evidence I owe them. But this isn't court where we are innocent until proven guilty, this is a financial system where even the dying are forced to pay so a disability company can recoup their costs, even when the person is still legitimately ill.
I worry for the others in the future who have to make the same decisions between marriage and divorcing, dealing or not dealing, medication or food then eventually choosing between healthcare and their homes.
I've tried to advocate, begging anyone with the power to change the laws that have put me in this position, but at the climax of the healthcare debate, my lungs failed due to bronchiolitis obliterans and I retreated home to enjoy my family and fight my disease.
I can't fight to survive cancer and fight to survive economically at the same time.
I'll fail at one and I refuse to lose my life.
I can only pray someone stronger and healthier will hear me and offer their assistance.
If medicare has a donut hole then the middle class has a blackhole, where we work and contribute to society, We pay our bills, We pay our taxes and mortgages to support our country, we even vote, only to find that our country does not support us in return.