BEYOND MY UNDERSTANDING OF WHAT BEING HUMAN MEANS by CJ Hanson (PART TWO)

To my twin sister, Linda Rippee,

I just came on Facebook, after taking a nap. I could barely read through your post without tears flowing down my face like a stream from a mountain top. A stream that never ends. I didn't think I had this many tears left. I feel so helpless, with my own illnesses, that I am unable to help with a physical presence. The responsibility and the experience of actually interacting with Mark have fallen on your shoulders.

Is there such a thing as survivor's guilt without having actually lost someone? I can't describe the pain I feel any other way, so I’m at a loss. I’m at a loss at the pain and suffering he endures every day on the streets, knowing that we have no legal right to force him to live with the few of us left, nor is it even possible. Knowing that we have fought for 32 years trying to help him and make his life better, and knowing that he blames us for allowing him to live as the doctors didn't believe that he would. Knowing that the laws in this county, state, and nation are against families of loved ones who suffer from traumatic brain Injury and serious mental illness. Knowing that, no matter how hard we’ve fought every day to change minds, hearts, rules, and laws, so far we have failed. We have failed.

I have such a hard time believing that we’ve failed, but we have. It matters not that we have fought every day. Every single day for 32 years. Yes, for a while he was able to live a somewhat normal life until the mental illness set in. The doctors said it would happen eventually, but what has happened to him since? The apathy of people with the power to change policies, rules, and laws is a clear indication that, not only have our efforts failed, but the lawmakers have failed. How many potential bills have failed over and over as the lawmakers insist there is more legislation now for the seriously mentally ill than ever before. That may be true, but they keep failing. Failing the sufferers. Failing the families. Failing society. No human being should have to live without options like our brother. I am having difficulty understanding anything anymore about this travesty.

Facing my own mortality only makes me feel more like a failure. I still have in my mind that 12-year-old boy who tracked me down at a friend’s house after I had moved away from home at 18, and clung to me begging me to move back home. I still have in my mind seeing Mark that day of the accident, barbecuing at Mom and Dad's house and telling us how he wasn't going to keep that motorcycle but was putting it up for sale. I still have in my mind that he was on his way to my home, in Fairfield, that night to see me when the accident happened.

Did I fail him, Linda? Did I fail him by making the decision to let the doctors try to save him? Was I wrong to want him to live? I thought I was making the right choices while I actually had power of attorney back then. I'm not so sure, now. What are we to do now? Lawmakers and officials have tired of our continued efforts and have turned their own blind eyes away from the situation. No one, who has any power to give families back their rights, or to change the laws preventing us from helping him, cares. Not really.

I have no faith in lawmakers’ motivations anymore. Not one has proven that they care enough about the families of the seriously mentally ill to truly push through what needs to be done to make a real difference. I can't stop crying — for Mark, and how he lives and suffers; for you, being the last one in our family to be able to go out and find him; for myself, for being so helpless in my own infirm condition and disability; for Mom, who will leave this earth knowing her youngest child will most likely die on the streets; for all the ignorant and uninformed people who find such joy in blaming our family; for those in the community who do care and have tried to help Mark and us for so long; for our society; for this very world.

My despair and tears are beyond my ability to explain anymore. Beyond my understanding of what being human means.

See Linda’s story yesterday, June 26, 2019. “Rewind and Erase.”

Mark

Mark

TOO MANY FAMILIES LIVE THIS PAIN by Jacque Cowger Mckinney

I have struggled with this post, but my husband, Steve, and I discussed it last night and decided we want to help educate, to the best of our ability, and to help make sense of some of the madness that surrounds us.

For a while, we knew that, in Illinois, a person has the right for a jury to determine their continued treatment in an inpatient psychiatric setting. We faced a six-person jury with an alternate to determine continued treatment for our child. We worried and dreaded the situation for weeks. How could six people, who had no experience or comprehension of this illness, determine our loved one's care? It seemed to me that a qualified physician should make that determination.

Well, yesterday, we arrived at the courtroom at 9:30 A.M. and left around 5:30 P.M. The decision was for continued treatment. I admit, after being sequestered ourselves, for five-and-a-half hours, we were frustrated and angry. But, after all was said and done, we realized that the world view of seven more individuals was changed forever. They were educated on the illness as well as the insufficiency of services in our state. One juror looked at us and said, “My heart breaks for you.”

I post this to say that, sometimes, we must be vulnerable and transparent for others to comprehend the nature of the beast we deal with, and for changes to be made. We’re not alone. Too many families live this pain. Please pray for change in our country for the care of some of our most vulnerable.

Jacque & Steve

Jacque & Steve

WE ARE SICK, NOT EVIL by Craig Willers

I wanted to share these thoughts to help people understand what mental illness really means.

I've been sick with schizophrenia since I was 18 and I'm 54 now. Mental illness can be deadly and is little understood in the world today (still). As a patient, I had to learn about my own illness in order to move forward with my life. People without mental health challenges need to learn about mental illness, too. We can't stay in the Dark Ages forever.

Everyday I hear someone say, "so and so is nuts/crazy/a lunatic" in an attempt to describe behavior they find offensive and contradictory to what they believe. Please refrain from attaching "insane" to evil or wrong behavior/beliefs. It makes you sound uninformed at best and unintelligent as well. We are sick, not evil.  Thank you. 

 

Photo Credit: Dominic Dean Flickr

Photo Credit: Dominic Dean
Flickr

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