Love is Not a Commodity

About a month ago, I went to Chicago on a business trip. It was just overnight and my schedule was such that I really only needed an extra shirt, a pair of panties, and toiletries. I usually check a bag when I fly but I was packing so light, why not carry on? So I abandoned my standard packing system.

Instead of packing the toiletry case I always take, I tucked my liquids into a clear, ziplock bag and the rest of my essentials into a Clinique pouch (free to customers who spend $30 or more as part of their Spring promotion 🙂 ). Everything went into a backpack.

That night at the Hilton as I was getting ready for bed, I couldn’t find my contact solution. This is what happens when you abandon your standard packing system.

I called the front desk and the manager informed me the gift shop was closed, however, there was a 7-Eleven just a block away. Sigh. I put my clothes back on, took the elevator to the lobby, trudged the block to the 7-Eleven, charged a travel size of saline solution, and exited the shop.

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As the glass door swung behind me, a homeless man standing on the curb called out, “Miss, can you spare a dollar?” I turned to face him and apologized.

“I’m sorry. I don’t have any cash. All I have is a credit card.”

He touched the brim of his baseball cap. I kid you not. “Well then, that’s all right. Don’t ye worry ’bout it. I thank ye. Ye looked me in the eye. Ye gave me respect. I thank ye.”

So here’s what I think about on Mother’s Day. Where was that man’s family? Why was he alone, living on the streets, begging for money? He didn’t seem any older than me. Where was his mother? When his mind slipped or he turned to drink, when he couldn’t hold down a job, when he failed to be the son she’d hoped he’d be, did she disown him? Did she refuse to take his calls or allow him into her home? Ok, maybe she’s no longer living. What about his siblings? What about children? Nieces? Nephews? Cousins? Where are they? Did they all just decide he wasn’t worth the trouble? That he didn’t fit into the picture of how they wanted their lives to be?

This morning at church, Steve talked about how when God told Moses who He was, the first word He used to describe Himself was compassionate. The Hebrew word translated as “compassionate” actually means “womb-like”. The safest, most loved you and I have ever felt was in the womb. Steve went on to say that God loves us not because we earned it but simply because we exist. Like a mother loves her unborn child before she even knows him or her. Steve said a mother’s love may be the closest model of God’s love that we see on this earth.

Sadly, that is not the case for all of us. We grew up in homes where love was a commodity. Something we had to earn. Some of us strived for decades in hopes of securing our mother’s love. Some of us are still striving. Some of us gave up a long, long time ago. Some of us thought we had attained it only to realize it was never permanent. Like a paycheck, we had to work for it day in and day out.

Some of us succeeded in life despite never having gained our mother’s love. Some of us were all but destroyed. Some of us lost our minds. Some of us tried to comfort ourselves with substances. Some of us ended up on the streets. Like that man in Chicago. Maybe it’s not his mother’s fault. But one thing I know for sure. If someone had chosen to love him, simply because he existed, he wouldn’t be homeless.

Some of us are handing down that same legacy to our kids, teaching them love has to be earned because that’s the way we experienced it.

I refuse to pass on that legacy to anyone. I dare you to join me.

Photo credit: Dustin Diaz / Foter / Creative Commons Attribution-NonCommercial-NoDerivs 2.0 Generic (CC BY-NC-ND 2.0)

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Brain on Fire –> Must Read!

20130518-114155.jpgSusannah Cahalen was a 24 year old reporter for the New York Post when she was suddenly and mysteriously struck down with what appeared to be schizophrenia. It began somewhat nebulously with an obsession with bedbugs. It was 2009 and at the time, New York City was “awash in bedbug scares.” An exterminator told Susannah her apartment was bug free but she was so convinced of infestation that she shelled out an exorbitant amount to fumigate. She later learned that bug obsession can be a sign of psychosis called parasitosis or Ekbom syndrome.

As her illness progressed, she suffered seizures, paranoia, numbness and tingling on the left side of her body, wild mood swings, dizziness, nausea, flu-like symptoms, insomnia, loss of appetite, delusional thinking, hallucinations, and catatonia. She had out-of-body experiences where she could see herself as if floating above her own body. She was convinced that her dad was an imposter, even believed at one point that he had murdered his wife. For a month, she was hospitalized and completely out of her head. She has practically no memory of this time. A whole month of her life gone. Just like that.

A multitude of doctors struggled to diagnose her. They suspected alcohol withdrawal, mononucleosis, bipolar disorder, schizophrenia, postictal psychosis (psychosis following seizure), schizoaffective disorder. Then, a million dollars later, finally, FINALLY, the amazing Dr. Souhel Najjar, a neurologist, neuro-pathologist, and epileptologist discovered the true nature of her illness. Her blood work and spinal fluid came back positive for rare antibodies called anti-N-methyl-D-aspartic acid receptor. Her brain was inflamed; she had anti-NMDAR encephalitis. The NMDA receptors in the frontal lobe, responsible for cognitive reasoning, and the limbic system, or the emotional center of the brain, were under assault by her immune system. Her body was attacking her brain.

Brain on Fire: My Month of Madness is Susannah’s memoir about her terrifying experience. And I couldn’t put the book down. Susannah was the 217th person worldwide to be diagnosed with anti-NMDA receptor encephalitis since 2007 when a neuro-oncologist, Dr. Josep Dalmau designed two tests that swiftly and accurately diagnose the disease.

“Though researchers are far from fully understanding how NMDA receptors (and their corresponding neurons) affect and alter behavior, its clear that when they are compromised, the outcome can be disastrous, even deadly. Still a few experiments have offered up clues as to their importance. Decrease NMDA receptors by, say, 40 percent and you get psychosis; decrease by 70 percent and you have catatonia.”

To me, one of the most profound things about this memoir is how concretely it demonstrates that what we define as mental illness is, in fact, a symptom of a physical malfunction in the brain. Mental illness is NOT the illness. It’s a symptom of the illness which is in fact biological and possibly reversible. And that gives us all a tremendous amount of hope for future treatment. Susannah was cured. CURED. Once treated, 75% of patients with anti-NMDA receptor encephalitis fully recover, 20% remain permanently disabled, and 4% die. As Susannah says in her book:

“It just begs the question. If it took so long for one of the best hospitals to get to this step, how many people were going untreated, diagnosed with a mental illness, or condemned to a life in a nursing home or psychiatric ward?”

As I read, I thought of K, who I met in NAMI’s Family-to-Family class. Like me, K was attending the class because her sister was diagnosed with mental illness. Her sister had a breakdown in college and had been diagnosed with schizophrenia. Given that the median age for anti-NMDA receptor encephalitis is 20, the memoir made me question K’s sister’s diagnosis. I also thought about Jerri’s neighbor, C, also diagnosed with schizophrenia who is constantly in and out of the hospital. She, too, is obsessed with bedbugs and plagued with paranoia and delusional thinking. C was also first diagnosed while in college.

Many of the patients being diagnosed with anti-NMDA receptor encephalitis are children. The disease presents differently in kids and they are often misdiagnosed with autism. Researchers believe a percentage, albeit a small one, of people who have been diagnosed with schizophrenia or autism, are actually suffering from an autoimmune disease. Our understanding of these two brain disorders will likely gain the most from NMDA receptor research and in fact, just this week, I ran across this news item Hypertension Drug Works for Schizophrenia that describes a study where 20 patients with schizophrenia who took sodium nitroprusside, an antihypertensive medication, saw most of their symptoms diminish within 4 hours. There is pre-clinical evidence that suggests sodium nitroprusside modulates the activity of N-methyl-D-aspartate (NMDA) glutamate receptors.

The other thing that struck me as I read Brain on Fire is the huge role family played in Susannah’s diagnosis and recovery. Her parents did not label her “crazy” and refuse to have anything else to do with her. They stuck by her all the way, showing up at the hospital everyday, demanding that the healthcare system figure out her illness. Without their support, Susannah would likely have died or been institutionalized. Family members, you have no idea how important your support may be to recovery. Stick with it. This is God’s work we do.

You can read more about Susannah’s experience in her New York Post article, My Mysterious Lost Month of Madness and of course, Brain on Fire. I can’t promote this memoir enough as the information contained within could very well save someone’s life. Please feel free to share this post or spread the word about this memoir through all your favorite social media channels.

[Image source: Simon & Schuster]


Second Chance for Non-Violent Offenders

When my sister, Jerri, was 29, she broke into Mom and Dad’s house and stole a TV which, as the story goes, she sold for drugs. Mom reported the theft. Jerri was arrested for larceny, convicted, and received a suspended sentence and probation. The felony conviction can be verified as the state of North Carolina considers this a matter of public record and anyone can Google it for free. Which, BTW, I have because this being my family, one can never be too sure where the facts end and the fiction begins.

Jerri’s the one who says it was a TV. I find that hard to believe. The crime for which she was convicted was “larceny, amount in excess of $200.” Were 14″ TVs even worth $200 twenty years ago?  Because I sure don’t see her hauling the 27″ family job with built-in cabinet out of the house by herself. We’re talking pre-flat screen. That baby weighed about as much as a baby elephant. Even Jerri admits the details are a bit murky. A head injury, ECT treatments, drugs, and mental illness have all taken a toll on her memory. Rest in peace, little brain cells. The truth has likely died with you.

The episode happened during a time when the folks were in denial about Jerri’s mental illness. Jerri wasn’t getting treatment and was self-medicating. It’s likely that had she been effectively treated, she’d never have committed this crime. The same can be said for so many offenders, many in our prisons instead of hospitals where they might actually get help. Some of you have also shared your stories of felony convictions directly related to mental illness here at the blog.

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So I’m hoping what I’m about to share is really good, potentially life-changing news. North Carolina, and a handful of other states, have just passed a new law, effective December 1, 2012, that allows for expunction of first-time nonviolent misdemeanors and low-level felonies 15 years after completion of an individual’s sentence. Expunction means your record would be cleared. Background checks will reveal nothing about your crime. It’s a clean slate, a second chance. Thanks to Lynn at The Good Will Hunting Paralegal for bringing this to Jerri’s attention.

There is a form that must be completed and submitted to the court of clerk in the county in which the offense originally occurred. There is also a $175 fee but those who are indigent can get the fee waived by filing a separate petition. The details and forms can be found in the basic guide provided at the NC Second Chance Alliance site. The NC Second Chance Alliance is a statewide alliance of advocacy organizations, service providers, faith-based organizations, community leaders and interested citizens that have come together to achieve the safe and successful reintegration of adults and juveniles with criminal records by promoting policies that remove barriers to productive citizenship.

At the time my parents filed charges against Jerri, I was actually supportive of the action. The theft wasn’t Jerri’s first time breaking the law but she’d never been charged before because my parents had worked diligently to keep things out of the system. This drove me nuts as a teenager. I did not understand Jerri was ill. I thought she was choosing to make our lives hell. Mom said Jerri was hanging out with the wrong crowd. They were a bad influence. She was acting out to get even with Mom. And I thought my parents sucked at parenting. I mean, how was Jerri supposed to learn right from wrong if Mom and Dad were always bailing her out? If she never got to experience the consequences of her actions? Knowing mental illness was at play has completely changed my perspective.

People dealing with mental illness sometimes do things they would never do in their right minds. I understand that now. I also understand how a felony haunts you for the rest of your life. In North Carolina, 92% of employers conduct criminal background checks and applicants with criminal records are 50% less likely to receive a call back. Jerri hasn’t worked in over 15 years. And as much as I’ve encouraged her to apply, there’s a part of me that acknowledges how unlikely she is to be hired. Most applications ask if you’ve ever committed a felony. And as I’ve mentioned, its a quick and easy Internet search to find out. Even housing applications ask. Jerri was recently denied housing in a safer community because of a felony she committed OVER 20 YEARS AGO. For stealing from her parents. Okay, so that doesn’t make it any less wrong, but its not like she held up a bank. Or a 7-Eleven. There are also more than 900 state and federal laws that deny North Carolinians a wide range of privileges and rights based on a criminal record. For example, the right to vote.

I’m very excited about this opportunity for Jerri to potentially clear her record. We’re about to initiate the process. I’ll keep you posted . . .

Photo credit: anjan58 / Foter.com / CC BY-NC-ND


Child Abuse – Know the Signs

Over the weekend, I uploaded a post in recognition of April as National Child Abuse Prevention Month. (Thanks to Soul Survivor over at Bipolar for Life for raising awareness with this post.) My post has since been removed for personal reasons. However, child abuse is such a serious issue in this country, that I couldn’t just pull down the previous post without a replacement. Fortunately (and who would ever have thought I’d be saying this), I have more than one child abuse story in my backpack 🙂

One of the reasons I feel so strongly about raising awareness is child abuse and mental health can be interrelated. Many experts believe some forms of mental illness require both a genetic pre-disposition and a triggering event. The trigger can be anything from work/job stress to puberty to a traumatic event. I’d say child abuse is pretty traumatic. Also some child abuse occurs at the hands of adults who have uncontrolled/undiagnosed mental illness. When we hear the term “child abuse”, most of us immediately jump in our minds to “sexual abuse”, but there are other forms — physical, emotional, neglect. Adults struggling with mental illness may, for example, neglect their kids. They may be so out of their right mind that they’re unable to meet the child’s basic physical and emotional needs.

Next to sexual abuse, emotional abuse is probably the most difficult to discern. Particularly when the perpetrator is a parent who interacts differently with the child in public than in private. Its taken me many decades to reach the conclusion Jerri and I were emotionally, and perhaps physically, abused as children. I don’t think our mom intentionally set out to harm us. Her mother, who was also abusive, was her primary role model for parenting. Mom married when she was only 17, so add immaturity to poor parenting skills, throw in a probable personality disorder and you pretty much have the perfect cocktail for abuse. And when I read articles like Childhood Abuse and Neglect it only affirms my suspicions.

Interestingly enough, its difficult to isolate specific memories that illustrate the abuse. A lot of it was verbal. We were expected to stop whatever we were doing immediately when Mom gave us an assignment. Failure to do so resulted in screaming, threats, and name-calling. Even simple things like “Terri, please go get the mail” could escalate:

“Didn’t I tell you to go get the mail?”
“Yes, I’m waiting for a commercial.”
“I don’t care what you’re doing, go get the mail.”
“But Mom, its right in the middle of the program.”
“GET YOUR LAZY BUTT UP OFF THE FLOOR AND DO WHAT I TELL YOU NOW OR I’M GOING TO GET OUT MY BELT AND BEAT YOU SENSELESS.”

Not that she ever did actually beat us senseless or even to the point of leaving a whelp. She would threaten to “knock our blocks off.” In public places, she would jerk us up on our toes by an elbow and hustle us out to the car, all the while threatening us through gritted teeth. I was in college before I realized most parents don’t talk to their kids this way. And by that point it was already deeply ingrained in me that I was lazy and what I wanted didn’t matter. That I didn’t matter. My boss, BTW, would tell you how much he admires my work ethic.

I think one of the reasons I can’t recall specific instances is because they were so commonplace. It happened all the time. It was just part of life like brushing my teeth. I can’t remember specific instances of brushing my teeth either. But I did it everyday. (And still do 🙂 for those of you taking notes.)

Mom would routinely point out my physical flaws. I started getting acne when I was 12. She’d say things like, “Your skin looks terrible.” “Your hair is so stringy.” “You have the worst overbite.” And I don’t mean she’d say these thing once or twice. She’d say them hundreds of times. It was like she had no filter on what came out of her mouth and no concept of how damaging her words were to a gangly, introverted, little girl. I was ugly. I knew I was ugly. I still know it deep in my soul no matter how many times my sweet husband tells me otherwise. I look in the mirror and I see ugly. I wonder sometimes at work how people can even bear to look at me. One of the last times I saw my mother, she said, “Oh, just look at your eyes. You’re going to have bags under them for the rest of your life just like mine.” She said this gleefully.

I was told repeatedly that I was over-sensitive. Therefore, if her words hurt me, it was my own fault.

Jerri was told: “You’re uncoordinated.” “You aren’t any good at that.” “You never finish anything you start.” And when she was older, “You look like a slut.” “You dress so trashy.” And Mom constantly compared her to me. She was told my IQ was higher than hers, my grades were better, I applied myself more.

I sucked my thumb until I was about 10 years old. Funny, right? It’s one of the signs of emotional abuse – so no, not really. I was also extremely compliant. The idea of breaking the rules made me break out in a sweat. What if Momma found out? The thought terrified me. This is another sign of emotional abuse.

Childhood Abuse and Neglect describes the difference between using physical punishment to discipline and physical abuse. “The point of disciplining children,” the article says, “is to teach them right from wrong, not to make them live in fear”:

Physical abuse vs. Discipline
In physical abuse, unlike physical forms of discipline, the following elements are present:

  • Unpredictability. The child never knows what is going to set the parent off. There are no clear boundaries or rules. The child is constantly walking on eggshells, never sure what behavior will trigger a physical assault.
  • Lashing out in anger. Physically abusive parents act out of anger and the desire to assert control, not the motivation to lovingly teach the child. The angrier the parent, the more intense the abuse.
  • Using fear to control behavior. Parents who are physically abusive may believe that their children need to fear them in order to behave, so they use physical abuse to “keep their child in line.” However, what children are really learning is how to avoid being hit, not how to behave or grow as individuals.
  • Even when Mom never touched us, these 3 elements applied. We never knew what would trigger her rage and the verbal abuse that would follow. She almost always lashed out in anger. When she punished us, she would say things like, “You’re going to learn to respect me.” “You’re going to learn to do what I tell you.” But all I really learned was to be afraid of her and to loathe myself.

    My purpose for sharing details here is not out of vindictiveness or to malign Mom’s character. Oh, I still get plenty angry at times but my inner grown-up says, “children don’t come with a user’s guide and most people parent the same way theirs did.” And that just makes me sad for Mom. My goal here is to increase awareness of what emotional abuse looks like so others can recognize it when they see it (or are doing it) and intervene.

    Oh, and since I didn’t cover sexual abuse, here are some good links:

    Things you can do to help protect your children from sexual abuse
    Signs of sexual abuse.


    You Can’t Judge a Girl By Her Panties (or Lack There Of)

    Consider this an object lesson and the object is—wait for it—panties. That’s right. I’m going to present you with several panty photos and get your impression of the woman who might wear them. We’ll see how close you come to the actual truth about the wearer. I know, this is a little odd, even for me, but there is a point and I promise to keep things PG-rated. So let’s begin.

    20121111-113734.jpgHere’s the first pair. What do you think?

    A little skimpy, right? Cute little snowflake but given the G-string, is cute what this wearer is really going for? She’s likely twenty-something, maybe playing the field, or maybe in a relationship where she wants to be prepared for anything. She’s comfortable with her body. She’s playful, sexy but wants to communicate a touch of innocence.

    Interesting but . . . WRONG. So a little tricky because there is NO wearer as these have never been worn. As for the intended wearer, well, that would be me, and yes, I’ll pause for a minute while you get back up off the floor, gain control of yourself, and stop laughing. There. Feel better?

    So the story here is I used to buy bra’s at Victoria’s Secret and I joined their Angel Rewards program. As an Angel, I was entitled to a free panty every month. A deal right? Weellllllll, if you’re 15 maybe. Turns out the free ones aren’t designed for those of us who like a little more coverage.

    Also, turns out the free panty is just a marketing ploy to entice you to visit the store. Yeah, I should have seen that coming. So I wised up and exercised my right to just say no. My husband, on the other hand, not so much. “But its FREE,” he kept telling me and when I refused to budge, he made the trip to Victoria’s —on my behalf—or so he said, not that I doubt him. Okay, maybe a little. Anyhoo, this was the last pair he brought home and while I’m flattered that he thinks these would look good on me, let’s get real. Hahahahahahaha. NEVER g-o-i-n-g t-o h-a-p-p-e-n.

    20121111-114240.jpgOkay, second pair. Thoughts on these?

    Hmmm. Practical, cotton hipsters. Not sexy but then not exactly granny panties either. Pastel color. Could be for a little girl but wait. Is that a vanishing edge I see? Ah. These belong to a working woman, a no non-sense gal – a sales person or a school teacher – someone who doesn’t need the distraction of panty lines. Not likely a very attractive woman. Probably not sexually active. Or if she is, she and her partner are REALLY comfortable together because she doesn’t feel the need to impress with te-niny triangles of satin and lace.

    Better, but still WRONG. Again, these are mine—see the pattern forming? And yes, these are my goto everyday panty. And while it’s true, I AM a working woman, I buy the Soma vanishing edge brand more as a, eh-hem, health conscious consumer. They’re Oz-approved, you know. That’s Dr. Oz, THE leading expert on all things health (and don’t tell me you don’t DVR him) and according to his extremely important episode, uh, scientific research, on cellulite prevention, these panties are the way to go. True to the name, they virtually eliminate panty lines, so you were right about that, and there’s no elastic in the legs allowing better blood flow and less fat cell accumulation. So don’t judge me. “Not a very attractive woman,” humph. Let’s be a little more considerate on this next pair, shall we?

    20121111-114418.jpgUh, right. Spanx. Obviously for a woman who’s a half-size larger than some of her clothes. NOT comfortable with her body. Maybe has a muffin-top she needs to camouflage. Could be any age really but likely younger since she still cares how she looks. Probably single because, again, still cares how she looks.

    My, you ARE cynical today. Might I suggest a second cup of Joe? As for this pair, your guess is as good as mine. Never seen them before in my life. Really. Have absolutely no idea about the kind of woman who would wear these. If I had to guess, mind you I really don’t know anything about them, but if I had to, I’d say these were worn by a fashion-forward lady with a special dress for a special occasion like maybe her 40th birthday or perhaps, 25th wedding anniversary? But then I’d only be guessing . . .

    20121111-114512.jpgAnd now for the last photo. That’s right, there are NO panties here. What kind of woman wears no panties at all? My mother would say a slut, a hooker, a prostitute, a “ho” (although I believe the politically correct term might be “pleasure technician”). A woman with no morals. A party girl, a stripper, a playboy bunny. Need I go on?

    But wait. Let’s think this one through. What about a homeless woman? She’s living on the street with only the clothes on her back and let’s face it, panties wear out. Do shelters provide underwear in their clothes closets? Many do not. What about a lady at a battered women’s shelter who fled for her life and left all her belongings behind? What about a single mom at the rescue mission who’s trying to get back on her feet? What about the skads of low-income females who do their clothes shopping at Goodwill and Salvation Army stores? When was the last time you donated undergarments to these stores?

    Never. And that’s the point. No one does.

    So why am I posting photos of my panties online? I want to start a panty raid.

    I had an ah-ha moment two years ago as I was packing my sister’s clothes for her move to Durham. I was surprised to find she didn’t own a single pair of panties. When I asked why, she said, “You can’t buy them at thrift stores and I’d rather spend my money on groceries.” So now, every Christmas, one of the gifts she gets from me is panties and bra’s.

    And, as we’re now steadily approaching the holidays, I’d like to enlist your help. Won’t you join me by raiding your local department store this month and donating NEW bra’s and panties to your local shelter, rescue mission, GoodWill or Salvation Army? You don’t have to purchase at Victoria’s Secret, or Soma, or Spanx. Target and Walmart have perfectly good underwear at reasonable prices. Consider this a special Christmas project. Or a non-random act of kindness. Or a tangible means of linking arms with your sisters nationwide. And don’t forget, your sisters come in all sizes 😉


    The Mess that is Medicaid

    My sister is legally blind. Without glasses or contacts, Jerri can’t read a page held an inch from her nose. If you point at an object 20 feet away, she can’t tell you if it’s a bush or a Clinton. For that matter, she can’t even tell you’re pointing. You’d have to take her chin in hand and point her face in Hilary’s direction. Even then she might mistake her for a Juniper.

    She’s been wearing the contact in her left eye for 4 months. The same lens for 4 months. A lens that is supposed to be discarded and replaced every 2 weeks. She doesn’t have any glasses. Her frames broke quite some time ago. She still has the lenses and when she’s really desperate, she tapes them on to the frames of her sunglasses.

    Jerri hasn’t seen an ophthalmologist in two years. Despite the fact that at her last visit, she was diagnosed with glaucoma. She doesn’t use the drops that were prescribed because you can’t use them with contacts.

    Now that she’s in her right mind, Jerri is trying to take better care of her eyes. She knows she needs to treat the glaucoma which means she needs glasses. But when you’re as near-sighted as she is, a basic pair of no-frills glasses costs about $300. Medicare and Medicaid do not cover this.

    Completely on her own, Jerri researched potential venues for financial help. She contacted the Department of Social Services and was able to obtain a voucher for eye glasses from the NC Division of Services for the Blind. But she had to have an eye exam to get a prescription. In NC, Medicaid used to cover routine eye exams for adults but not any longer thanks to legislation (House Bill 200, Section 10.37.(a)) effective October 1, 2011. Fortunately, and who’d have ever thought I’d be making a statement like this, Jerri has glaucoma. If you have a medical eye condition, Medicaid will still pay for the exam.

    So I talked to my ophthalmologist, Dr. Jill Bryant, about Jerri, her disability, and her financial situation and Dr. Bryant agreed to see her. (Not every doctor will you know, given Medicaid is her insurance for eye care.) Not only did Dr. Bryant give Jerri a complete and thorough exam but she treated her with dignity and respect. From the minute we walked into the office, everyone, from the office manager to the eye technician, looked her in the eye, appropriately directed their questions to her (not to me), and were transparent about what Medicaid would and would not pay. For example, contacts are considered to be cosmetic so Medicaid does not cover contact lens fitting but Jerri really wanted a contact lens prescription in addition to one for glasses. That part of the visit was $80 typically payable same day. The office manager told us to stop by after the exam to discuss a payment plan. Dr. Bryant, knowing Jerri’s situation, reduced the cost of the lens fitting to $55. But when we spoke with the office manager, she just waved her hand and said not to worry about it! Dr. Bryant also filled a bag with saline solution and glaucoma medication samples.

    I left Dr. Bryant’s office with two thoughts competing for attention. One – what a beautiful gift Dr. Bryant had given Jerri by simply treating her like a human being. And two – what in the world will Jerri and others like her do when Medicaid crashes and burns?

    It’s virtually impossible this close to November not to be concerned about Medicaid. No worries, I’m not going to go all political on you. Frankly, I don’t think either candidate has a good plan for this one. Medicaid is broken. It has been for years.

    Medicaid is a jointly funded cooperative venture of the federal government and state governments to assist the states in providing medical care to people in need. Because the federal government contributes funding, it also regulates how it is appropriated. For example, the federal government legislates who is eligible for Medicaid. States cannot limit enrollment to manage costs. The primary means that States have to manage Medicaid costs is to reduce the amount of payment for services to doctors. So every year, most States cut this payment. Because of this, Medicaid pays physicians way below the market rates to care for Medicaid patients. In 2008 (when this was last measured), according to the Centers for Medicare and Medicaid Services (CMS), Medicaid paid physicians approximately 58% of what private insurers paid for comparable services. Low payment, the excessive paperwork required to file for Medicaid reimbursements, and the amount of time it takes CMS to pay are all reasons why many physicians choose not to see Medicaid patients.

    20121006-003448.jpg
    source: Manhattan Institute for Policy Research

    When physicians do see Medicaid patients, the care they provide is often substandard resulting in poorer outcomes. One study in the Annals of Surgery examined outcomes for 893,658 individuals undergoing major surgical operations from 2003 to 2007. [LaPar DJ et al., Primary payer status affects mortality for major surgical operations. Annals of Surgery. 2010 Sep; 252(3): 544–51.]

    In summary: Medicaid patients were almost twice as likely to die as those with private insurance; their hospital stays were 42 percent longer and cost 26 percent more. Compared with those without health insurance, Medicaid patients were 13 percent more likely to die, stayed in the hospital for 50 percent longer, and cost 20 percent more.

    It only took a couple of doctor visits with Jerri for me to see that she gets fewer tests and referrals than I do with my private insurance and we see the same doctor.

    In 2009, there were over 50 million Americans with Medicaid. Currently, Medicaid provides health care coverage to low-income families with dependent children, pregnant women, children, and aged, blind and disabled individuals.You may be aware that one provision of the Affordable Care Act ( aka Obamacare) expands Medicaid coverage in 2014 to low income individuals without dependent children, an additional estimated 17 million people. Add that to the people already receiving Medicaid and that’s over 20% of Americans. That’s a lot of people!

    Perhaps you see my concern. In a system where it’s already difficult to find a doc who accepts Medicaid, how will these people get care? What additional services (like eye exams) will have to be cut to keep the program solvent?

    It’s disturbing that so many people are so poor. I struggle sometimes with “entitlement” programs. I’ve met people who are working the system. At the beach, I have a neighbor who’s a veteran. He broke his back in Basic training before active duty and was honorably discharged. He had a number of surgeries and appears completely healed. He kayaks, cycles, runs and lifts weights. But he chooses not to work. He’s living on VA benefits and disability.

    To me, that’s wrong. He might not be able to serve in the military but he CAN work. He chooses not too.

    But I also know many people with mental illness who would be on the streets without these programs. For example, Jerri and her neighbor with schizophrenia, Catherine, who is in the hospital again because her medications aren’t working. There will always be poor people, legitimately poor people, and we need a way to take care of them. I hate that this responsibility falls to our government, but the practical side of me acknowledges if the government doesn’t do it, no one will. Sadly, I’m not sure either candidate has a friend or family member who is legitimately poor. I think that’s a basic requirement to even understand the problem.


    Stuck

    Jerri, in her right-mindedness, is thinking about making some life improvements. She would like to move into a better neighborhood where dealers don’t make door-to-door sales calls. Also, Housing for New Hope recently terminated the housing agreements for a number of tenets in her apartment building and while she makes an effort to follow the rules, she is tired of worrying that she will be the next one to go. So Jerri recently applied for another subsidized housing community in the north part of town.

    The application asked if she had ever been charged with a felony. Unfortunately, Jerri had to respond yes. Twenty years ago, when she was 29 and a practicing addict, she broke into our parent’s house and stole a TV. Mom reported it and Jerri was charged with larceny. She was put on probation and required to do community service. Jerri considered lying on the application but to her credit, she decided it was best to tell the truth (which, BTW, is google-accessible for anyone industrious enough to check). She hoped that the two decades of felony-free living since would weigh in her favor.

    Apparently, it did not. Her housing application was denied.

    Jerri is also considering applying for a part-time job. She can barely make ends meet on her disability check and in order to save money for a scooter, she is eating at the shelter and ear-marking her grocery money for the purchase. The problem with getting a job, however, is it puts her disability payment in jeopardy. I haven’t researched the rules (and if you know them, please share), but I’m told her disability check will be reduced by the amount of money she makes and when her income reaches a certain amount she will lose disability altogether. Which means she will also lose Medicaid. We could live with that if we knew she was going to a) remain stable and b) be able to hold down a job and c) make enough money to afford Medicare.

    I’m not sure she can even get a job. There’s the issue of the felony for one thing. Every job application includes a question on criminal record. She has no recent job experience and she also needs to work on her personal appearance. Whether we like it or not, others judge us on our appearance and particularly when assessing us for a job. For years Jerri has been too overwhelmed with symptoms to care about personal hygiene and this has taken a toll on her teeth, hair, and nails.

    I read a fascinating memoir over the weekend, Signs of Life and the following observation by the author, Natalie Taylor, really resounded:

    I never realized that certain people really are stuck. And they are not stuck because they don’t work hard or because they don’t want to get out of where they are. They’re stuck because certain forces in the world won’t let them out.

    I think a lot of people with brain disorders, Jerri included, are stuck even after they recover. Many of them have police records because of things they did when not in their right mind. They can’t explain the gaps in their job history because that requires touching on the taboo mental illness topic. They’ve lost touch with the norms of basic etiquette and personal hygiene. And in the US, they are reliant on social systems that don’t support easing out of disability and back into the workforce.

    Is there any hope for them? Really interested in your point of view. Am I missing something?