Renee Blare Christian Author

Silence is Not Always Golden

What does suffering look like before it’s considered bad enough to be “true” suffering in the eyes of society? The law? It’s a good question. It’s a complicated question.

Unfortunately, it’s a common question asked of the wrong people by the wrong people. But what should be expected in this day and age of disability discrimination? Not even death and suicide is considered enough “suffering” to warrant a second glance by the powers that be merely a side effect of tragedy.

The fact that my rare condition has eliminated any ability for me to have a quality of life is a tragedy. But it is a strategic tragedy directly linked to the unconstitutional policies within the Department of Justice and the United States government. Those policies have had a direct impact on my healthcare or should I say repetitive lack thereof.

Suffering.

My healthcare has been disjointed, tattered, unprofessional, hypothetical, fearful, abusive, unpredictable, dangerous, and life-threatening for the last seven years. The psychological, mental, physical, and emotional strain has taken its toll in many different areas of my life especially when met with no assurances, advice, or assistance from any source— advocacy, political, or legal.

Suffering.

My husband and I were the only ones who doggedly pursued the source of my health issues, mainly the pain, when doctors refused, ignored, or took the easy road of “time.” After nine doctors, two years, and great emotional, mental, financial, and physical cost, I was finally accurately diagnosed with a rare excruciating disease— too late for any law suits, too late for drug trials to be effective, and too late for hope of remission.

Suffering.

My life ceased to be a life I recognized. Gone was the career I worked over twenty-five years building, used to support our family and plan the future retirement and dreams upon, spent my days helping others, and loved passionately. Pharmacy remained a merely a title— a distant hope. Today, it’s a dim light that flickers as if in a dying universe.

Suffering.

My calling as a Christian Author and Artist is the most painful of all. My surgery was in 2017. I was last published in 2016 from the last of manuscripts written. I have a smattering of manuscripts started in 2017, but I have not been able to write since my surgery in May of that year except blogs.

This fact has to be the most emotionally agonizing of all. I am struggling to do the one thing I love the most in the world for God who I love the most in the universe. Share His Love and Message with the world. And I can’t.

Why can’t I? Pain. Agonizing,, severe pain. CRPS, my life, me…because my days are filled with severe pain, emotional, physical, and mental agony— all the time.

I have been bullied, belittled, mocked, ignored, lied about, lied to, threatened, forced to sign attorney drawn up contracts, travel five hours round trip for an infection or to get seen for my pain care, treated as a criminal, and kicked out of local clinics simply because I’m in chronic pain and take chronic opioid medications for a disease that was never my fault in the FIRST PLACE.

SUFFERING.

But I guess I’m not suffering enough or the right way or because I haven’t put a bullet in my head yet (believe me, I’ve thought about it), or taken all my pain meds at once. It’s not considered SUFFERING ENOUGH for someone like me to have my Civil Rights violated and everything in my life taken away including my health, career, and future.

What will be enough? What is the right way to suffer? When will it be considered DISCRIMINATION or morally correct and NOT HARM to refuse healthcare to someone simply because she has a rare disease or is a Chronic Pain Patient? Disability is not a sin, is it? It’s not a death knell in America, right? Or have things changed since the ADA was written?

For me and my husband, our disabilities have become nothing but suffering. A way for the community healthcare system around us to DENY care and force us to search for treatment elsewhere. To force us to drive hundreds of miles and SUFFER extreme pain to receive care we should be able to receive in our own town— according to the Mayo Clinic. And possibly even to eventually drive us from our home and place of security and safety? If this isn’t wrong, I don’t know what is.

SUFFERING.

They won’t succeed in driving us from our home— not if I have anything to say about it. I’m homebound so if they want me to leave, it’s going to be kind of hard. I’ll keep going through hell to go to my doctors out of town because they’ve forced me to. I don’t have a choice. So will my husband because he must take me.

But if there is an emergency, I pray I make it to the closest hospital. That hospital won’t be the one in my town where every provider has denied me care and forced me out. Because of that fact, in an emergency, I don’t trust anybody to treat me, much less save my life. So I have asked my husband and my mother to have me taken to them emergency clinic one an hour away or the hospital even farther. And if I don’t make it, oh well.

Suffering.

That’s “my life” with a rare disease and severe pain in my little slice of America. That’s “my life” with it in my tiny sliver of biased Wyoming. That’s being DISABLED and trying to obtain HEALTHCARE from the paranoid, fearful providers who have decided to tow the government line to the detriment and outright extermination a large chunk of Americans called DISABLED.

Scratch that— that’s not “my life,” that’s MY SUFFERING.

But I guess I’m the one that gets to live it. No, my husband and I get to live it. Thanks, American Government. You are killing your own.

In Christ, always,

Renee Blare, RPh (disabled)