Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

Thursday, April 04, 2019

One Was Never Enough




One was never enough. He couldn’t stop at one beer, one game, one joke, or one woman. One good deed led to another, the same as one drug to the next. He lived with passion, loved to excess, screwed up with conviction, lost with honor, and never forgot a friend. He couldn’t keep a job, stay out of jail, hate anyone, or pass a person in need. He broke my heart one minute and caught it the next, contradicting his brawny exterior with deep sorrow and feather light caresses.

His failure to manage his life didn’t keep him from protecting mine. As years passed and he lived more in than out of the drugged fog, he always climbed from the hole when I needed him. I saw him at funerals, heard from him when I was sick. He carried furniture when I moved, never missed a birthday, Mother’s Day, or divorce, and showed up to catch tears when I hurt.

He died before my body gave in to disability, but left his love behind to carry me. Often, as I lay struggling to adjust to my new life, memories of his smile brightened my days. Remembering his free-spirited outlook sparked hope that I would either recover my spirit or learn to lose with honor the way he had.

Accustomed to pain and resolved to fate, I went to bed one night without giving my new symptoms a second thought. Hours later, patience exhausted and fear moving in, I considered giving up. How much willpower kept me alive, and would it all be over if I just let it go?

I recognized the feather light touch immediately, and the spirit that crawled into bed beside me. The touch became a caress, followed by a full hug with an invisible shoulder to carry my weight. Somehow, I knew it would be the last time he visited. Maybe he gave everything he had left to me that night.

Maybe he knew one was enough this time.

Friday, May 05, 2017

The big question for our society

Six years ago today, I had enough blood drawn to perform every test that could be done - as part of a work-up for what was not MS but presented with all of the same symptoms (and more). As I was exiting the parking garage at the medical center, I heard a loud pop and thought I had run over something. Since it was a metallic sound and I feared it might have punctured a tire, I got out to look and found nothing.

I few blocks into the drive home, I felt extremely weak. I figured it was from the amount of blood they had drawn and decided it would be safer if I stopped to eat something and let the weakness pass. I drove to what had been my favorite deli for a bowl of soup only to discover it was gone. Went on a few more blocks to my favorite salad place and there were no parking spaces. So, I came home, called Briana to cry on her shoulder and she brought me a black and bleu salad that I usually love.
But it tasted horrible this time. Almost like the metallic sound.

It was hours before serious pain and weirdness set in. This time, I called Jessica to cry on her shoulder. Really to see if I sounded strange to her because I thought I might be having a stroke. She said I didn't sound slurred but I did sound scared and that wasn't like me, so she wanted me to call an ambulance.

I spent a week in intensive care with a subarachnoid hemorrhage of unknown etiology. After two cerebral arteriograms, they were certain it was not a stroke but still didn't know what caused the bleed. Weeks later, a post swelling and bleeding scan showed scar tissue consistent with the healing of a ruptured aneurysm.

I feel extremely lucky to have survived this with no residuals that doctors can see, although I know small ways in which I haven't fully recovered.

Before this incident, I had already been determined totally and permanently disabled with juvenile rheumatoid arthritis and secondary chronic fatigue syndrome from pushing myself too far for too many years. The rehab doctor who headed the team that evaluated my fatigue said it was unlikely it could ever improve at all, and said he would rather tell me, "You have cancer and this will end soon," but unfortunately, it looked like I would live a long time and be miserable most of it. He said the best way to explain to family and friends what it's like to be me is to ask them to remember that time they had the flu with a high fever and they ached so badly that they thought they would rather be dead than to have to get out of bed - and tell them that's how I feel on my good days. The team apologized for forcing me to exhaust my energy but put me on machines to determine exactly how much strength and energy I actually had to work with. The determination was that I had the equivalent of four hours of energy a day. If I used eight hours one day, it might be a week or two before I recovered. And I might end up on the floor unable to move. That happened a few times.

Eventually, I learned to manage those four hours so well that the doctors asked me to write a book and help others. I didn't do that. Fiction was more fun.

The big question for our society is what we want to do with people like me? I devoted a huge portion of my four hours of energy to doing everything I possibly could to protect people who needed it most - and my four hours a day was much more than most healthy people give. I fought for same sex marriage even though I have no interest in women. I fought for unions, and unemployment, and minimum wage increases even though I never had a union job and will never have a job again. I fought for ACA even though I had Medicare. I continued to fight for Planned Parenthood and reproductive rights even when I was post menopausal, for schools when my kids were adults . . .
Most of the disabled people I know are like me. We want to feel vital and needed, and we want to contribute to the world. And it is nice when we are appreciated for our contributions, even if our wisdom and experience are all we have left to give.

Unfortunately, it appears that our society is learning toward rewarding people who stalk people like me, telling us to hurry up and die (and in the case of Sanders and supporters, calling us ugly names and threatening violence if we don't get out of their way), and following that up with electing people who want to take away our healthcare, housing and food assistance, and social security.
One step deeper into the heartless pit, instead of offering us a Dr. Kevorkian option, they want us to stick around for painful deaths without medications.

There is nothing great about a society that turns its back on and even mocks people who hurt for any reason.

Tuesday, January 30, 2007

Living Around Disability

I carry a rather long list of diagnoses, several of which alone would qualify my permanent, total disability status. Most of the time, I try to ignore my disabilities. I am not embarrassed by my condition, nor am I apologetic. Thinking about them makes me feel sorry for me, which isn't productive or healthy.

However, I do write articles that I think will promote understanding or protection of people with disabilities without addressing my particular diagnoses or complaints*. Writing from this once-removed point of view serves two purposes. It protects me from pity which, despite, or maybe because of, the good intentions of the person delivering it usually leaves me feeling undeserving, because I am okay. Politically and financially, circumstances are not okay for most people living on disability incomes, so writing general essays, stories, and poems allows me an opportunity to use my experience and understanding of difficult political and financial circumstances to help others. Once in awhile, I write articles that include a universal glimpse from the inside.**

In this article, I want to share my guide to living around disability - a positive note, because singing the blues, especially with my vocal talent, doesn't get me far. Being born with optimism, a helpful measure of self-importance, and rose-colored glasses probably gave me a giant head start, but I believe with determination those who want can catch up.

Knowing and appreciating my self and my body are the most important steps I can take to ensure I live a happy, productive life. When I am aware of and loyal to my strengths, weaknesses, limits, and dreams, I function with confidence and I leave no questions for the other people in my life.

I live on a schedule and activity level that works for my body, with my conditions. I don't expect to be like anyone else or for anyone else to be like me, and I demand the same in return. I would not be ashamed if I were diabetic and required a strict dietary regime, insulin injections, and protective footwear. If I were a cardiac patient, I would insist my family and friends understand my need for frequent walks and my refusal to shovel snow. Likewise, I expect the people around me to understand that I will eat, sleep, exercise, and entertain around my conditions. I would not apologize to anyone if I had been born with no legs or a big nose, and I will not apologize for having no energy or walking funny.

My energy is precious to me. I will leave the dishes on the drain rather than spare the energy it takes to open and close the cabinets and drawers, and the toilet paper on the counter instead of putting in on the roll. I clean house and do laundry when I am able, which is not usually as often as others do. The only people I give permission to comment on those activities are those who say, "Move over so I can do that for you," and people under the age of three.

I make sure what I will do is nothing more than what I can do, comfortably. I don't over commit, and I don't apologize for not being able. To some, this may sound selfish. I believe just the opposite. When I take care of me, everyone around me knows exactly what to expect. The ones who truly care about me are happier because I haven't sacrificed my pride, my energy, or my mental health in apologies and regret.

How Your Job Affects My Life

I purposely broke the law. That's how far down my life had gone. Things that had once been important to me no longer mattered. With little shame and much defiance, I armed myself and hobbled out the door, making a conscious, premeditated decision to do wrong.

It was a big move for a person whose friends had mocked her for refusing to walk through a door with Employees Only posted on it.

"Anything goes, when everything's gone." Even before I lived it, the words of this song had tugged at my heart every time I heard them. Now that my understanding had gone from sympathetic to personal point of view, the chorus embraced me as validation for my deed.
"When you lose all hope, there ain't no right or wrong." Melodramatic? Maybe. Indefensible? Probably, but the sentiment expressed the defeat I felt at the time.

I reached my destination without incident, waited for my daughter to join me in the car and thank me for picking her up, and retraced my three-mile, back-street route. As I drove, she delivered every detail of the workshop. The instructor was from Spain and had brought a guitarist with him. The dancer's technique was worth every dollar the workshop cost and she couldn't wait to get home and practice what she had learned.

She raved on as I drove past the park, but stopped when flashing blue lights caught up with us on the other side of the overpass. My heart pounded as the police car pulled in behind mine instead of speeding around me.

I reached for my purse, and the protection I had remembered to bring. There were no red lights or stop signs. I had not exceeded the speed limit, or hit anyone or anything, so this had to be about my willful crime.

"Your license plate has expired," the officer announced.

"I know. Thirty-six days ago." My shaking hand closed around the defense in my purse, knowing he wouldn't stop with the expired tag. I pulled it out and left it in my lap while I showed him my driver's license and registration, and waited for the dreaded words.

"I need to see proof of insurance," he said, keeping my documents.

"That's the reason for my expired tag." I presented the envelope from my lap. "I recently renewed my policy and the insurance company failed to send my updated proof of insurance cards. I have a letter from my agent."

He refused the envelope I extended, so I removed the letter and opened it. Without looking, he informed me he could not accept my letter.

Remembering the time a police officer had removed my intoxicated husband from his car and delivered him home instead of taking him to jail, I felt sure, since I had endangered no one, this man would apply the same discretion with me. Unsound optimism drove my plea.

"I had to pick up my daughter, and the insurance company assures me the updated cards are in the mail. Please don't do this." I stopped short of telling him how many phone calls it had taken to resolve this situation, what a toll every simple problem took on my energy level, or how weary I was from being out of bed the last two hours.

He scribbled on a form. "It's only a citation. No problem. Get your paperwork in order, take it to the courthouse and show it to the clerks at the windows, and it'll be over."

No problem? Even for a healthy person, a trip to the courthouse was a problem. Time out of any day, driving downtown, finding a parking place, standing in line, dealing with overworked clerks, were all problems. For me, that entailed at least a week's worth of energy and endangered my life. I didn't have the oomph to explain, even if I had thought it would matter to this man. I put the citation and letter in my purse and hoped I had the resilience to make it home.

I switched insurance companies the next day and called the old one to tell them what had happened because of their mistake and cancel. This time, they immediately sent the card with a request to reconsider my decision. I didn't.

Insurance card in hand, I returned to the County Clerk's office to secure my updated license plate. After telling me about the late fee, this clerk said the one who had previously refused my letter should have called the insurance company for verification and saved me the fee and the citation.

I drove downtown, gave up hope of finding a meter space after three trips around the block, wound my way to the roof of a parking garage, waited for a smelly elevator, walked two blocks to the building, waited in line to be scanned for weapons, found 'the windows', and waited in a second line. My head swam as my blood pressure dropped and my temperature rose. When my turn came, I ditched my instinctive skirting of public surfaces and grabbed the counter for support before presenting my paperwork.

Relieved to have this experience behind me, I left the building and leaned against an outside wall to gather strength for my return to the car. I couldn't have identified the clerk inside if my life depended on it, but I did remember her words. "That's all we need. Everything's taken care of."

A short time later, I received a court notice for failing to resolve the citation. I called the clerk at 'the window'. After several transfers and a long wait, someone assured me the notice was a mistake; their records documented my 'taken care of' status.

I lost faith in 'the windows' crew when the second court notice arrived. This time, I called the court clerk, explained that I was on an anti-rejection drugs, had no immune system or energy, and that sitting in a crowded courtroom during flu season could have serious consequences for me. I requested permission to wait outside the courtroom in a safe place, or to go first. She told me the court does not make special allowances for disabilities.

On my second court date, my temperature was 104, every bone, muscle, and nerve in my body reminded me it wasn't happy with our connection, and I would have welcomed the flu if it promised to kill me and end the pain. Unfortunately, I did not have the strength to dress and leave the house to contract a new germ. I called the court clerk, who informed me I could not call in sick to court.

I tried 'the window' clerk again. She still insisted everything 'was taken care of' and the court notice was an error. She said not to worry, stay in bed, and she hoped I would feel better soon.
Four years later, I went to renew my driver's license and discovered that my failure to appear in court had resulted in a suspension of my license and a bench warrant. In no condition to deal with it then, I parked my car for months. My daughters drove me the only places I went - to the grocery, and the fourteen doctors offices and hospitals my most recent diagnoses and a surgery made necessary.

When ready to drive again, I returned to 'the windows' to see what I needed to do to get my driver's license back. The clerk looked me up in her computer, put me back on the docket, and handed me directions to a location across town. I was to go there, pay forty dollars, and have my license reinstated, before my court date.

Finally, something had gone my way. Actually, the before my court date information led me to believe more than one thing had gone my way. Why would I be eligible for reinstatement if they didn't know I brought in proof of insurance and updated tags? Before I left, the clerk told me I needed to take a money order because the office she was sending me to did not accept credit cards or cash.

My daughter drove me to the bank for the money order. I didn't have forty dollars cash, so I wrote a check to the bank – my bank, my branch. The teller asked for identification and I handed her my driver's license.

"I can't accept an expired ID," she told me. Fine. I pulled out my birth certificate, my Medicare card, and my social security card. None of them had a picture, so she would not accept them. I argued that the picture on my driver's license proved my identity, and the others were all valid. She wasn't going for any of it.

My daughter drove me to an ATM for cash, we went down the street to purchase a money order, and then to the off-site building listed on the paper 'the window' clerk had given me. A sign on the door said, Now Accepting Debit and Credit Cards. If only 'the window' clerk had known, I would not have wasted the last two stops.

I signed in, waited my turn, and found out they only renew licenses within one year of suspension, but I was eligible to get my license, I just had to start over with a learner's permit. I would have to test for the permit at another location. If only 'the window' clerk had known this, we wouldn't have wasted the last three stops and I wouldn't be holding an unnecessary money order.

"We're already out," my daughter said. "Let's go ahead and drive over there." I let her convince me I could pass the written test in my frazzled state.

She drove me to the next location. I waited in line. The clerk took my information, confiscated my expired driver's license that had been useful as identification everywhere except the bank, handed me a form, and instructed me to go around the corner to the testing room.

I smiled when I saw the giant stop sign outside the open door. I figured it was the first part of the test, and stopped. The clerk inside the room looked up and huffed. "You can come inside," she said. Her tone indicated I might be the stupidest person ever to come through the door.
I smiled again and handed her my paperwork. Without returning my smile, she pointed to a machine with goggles on the front. "Step up there for your vision test," she ordered.

My forehead pressed the lever on top and illuminated a screen. Through the goggles, I read the top line as instructed.

"Read the third column," she said.

There were no letters in my third column. All I saw was a blank rectangle. I told her this.

"You're blind," she said. "You fail and you should see a doctor."

I laughed. No one would tell another she was blind, in a flippant tone, unless kidding. Almost no one, this one did not laugh with me.

"There must be something wrong with this machine," I said. "There are no letters in the third column."

"Yes there are. You need to see a doctor."

I stepped away from the machine. "I see my ophthalmologist more often than most people see their spouse. I promise you I am not blind."

The next clerk correctly detected my loss of patience and invited me to try her machine. I stepped over, activated the lever on her machine with my forehead, and read off the letters in the first two columns. Her third column was also empty. I knew I wasn't blind, but panicked all the same. Obviously, something was wrong with my vision.

This woman smiled and turned to retrieve forms from a folder on the desk behind her. "You must have mono-vision," she guessed. I confirmed. "Our machines can't test mono-vision, so you will have to have your doctor fill out these forms." If the first girl had known this, she might not have been so rude.

I returned to the waiting room, told my daughter the outcome, and decided I might not want my driver's license after all. "You aren't blind, Mother. We probably have time to go to the doctor's office and get back here before they close. Let's go."

In the car, I looked at the forms and decided it would be inconsiderate to the doctor and the patients who had scheduled this time if I walked in and asked him to complete two pages of questions on my forms. I had my daughter take me home, where I faxed the forms to the office and asked the doctor to return them at his convenience.

Obviously, I did not get my driver's license before my court date. My other daughter drove me to court. As usual, the docket was long and the attorney cases went first. An hour is about how long I can sit on a hard surface, or speak without a drink. Two hours into the session, I considered taking the pain pills in my purse, but knew I'd choke if I tried to swallow them, and didn't want to risk compromising mental clarity. I changed positions often, unable to find one that relieved the pain in my hip although the movement secured my ability to walk when I did finally get to stand again.

"I'm going to ask the sheriff if they can call you soon," my daughter whispered. I reminded her that the court does not make special allowances for disabilities. The sheriff noticed my distress, or our whispering, and came to see if I was okay. I explained my situation and asked if he could permit me to leave the courtroom to walk and get a drink of water, and explain my absence if they called my name while I was out. He granted permission.

When I returned, the sheriff said he had pulled my case, explained the situation, and asked the judge to call me soon. I thanked him. An hour later, he shook his head when I pulled out a tissue to dry my eyes.

My hip was out of socket when I walked to the front of the room, but I made it there without limping or falling. I leaned on the podium for support. No one read my charges so I didn't know they had dropped my real crime - driving with an expired license plate. I might have suggested that was proof I had satisfied someone at the windows' at some point.

The judge asked if I had documentation to prove I had insurance on that date five years earlier. I said I had given my documentation to the clerk at 'the windows', and could not reproduce it because I didn't remember the name of the insurance company. She gave me another court date and said to return with the documentation. Assuming she either hadn't heard or didn't understand, I explained that I could not produce the document on any court date, since I had left my proof at 'the windows' and could not remember the name of the insurance company to ask for a duplicate.

She sneered, chuckled, rolled her eyes at the snickering bitch beside her, and finally asked, "Do you expect me to believe you don't remember who you had insurance with?"

I said yes, I did ask her to believe that because it was the truth. I had cancelled the policy five years before and had no reason to maintain that information since I had delivered it to the court and been assured my citation was 'taken care of'. She told me to either bring the documentation on the next court date or go to jail. Again, she said she could not believe anyone would forget who they had insurance with five years before.

My daughter came forward and explained that she had been with me the night the officer pulled me over. "I'm a witness. My mother had the insurance information in her purse that night, but the police officer wouldn't look at it." The judge told her to sit down.

I wanted to explain that I live on disability income, drive junker cars, and go with whichever insurance company offers me the lowest rate, but the judge refused to listen to another word from me.

"Who do you have insurance with now," she asked.

"I don't have insurance now," I answered. "I don't have a driver's license and my car has been parked for months."

"For months?" She feigned horror. "But you haven't had a license for years."

"No one told me I didn't have a license," I explained. "I only found out when I tried to renew my driver's license."

"I simply don't believe you," she said. "And I've done everything I can to help you."

"No, you haven't," I countered, because she had not allowed me to present my entire defense, or called the clerk from 'the window' to testify that the court notice was a mistake.

She slammed her hand on the desk and ordered me to sit in a chair in the front of the courtroom, until I was ready to apologize or she decided to send me to jail, whichever came first.
I went to my time-out chair, more humiliated and angrier than I had ever been in my life. Someone at the insurance company had made a mistake. Someone in the County Clerk's office had been too lazy to call my insurance company and renew my registration. While twenty thousand unserved warrants sat in a pile somewhere in this city, a police officer pulled me over for driving with a license plate that was thirty-six days expired and couldn't give me the time it took to read the two-paragraph letter I presented in my defense. My crime was paying my taxes late, and the system's built-in late fee would compensate.

Somewhere between the clerks at 'the window' and the person who sends out court notices, someone missed the fact that I had 'taken care of' my citations. Later, someone(s) behind 'the windows' lost my paperwork, and someone in the system forgot to inform the clerks at 'the windows' about the policies in that the office across town. Now, I was stuck with a judge who rolled her eyes, called me a liar, and denied me the opportunity to present my case.

On a scale of one to ten, my physical pain was at least a ten. Emotionally, I probably registered somewhere around fifteen. Something about being treated like a two-year-old made me behave the same. I sobbed. I wiped my nose on my sleeve because my purse was unattended in the back of the courtroom and the judge wouldn't allow anyone to come near me. The judge asked the giggling fat bitch beside her what my problem was, and together they laughed at me. The sheriff looked at me like his heart might break.

One brave man defied the judge's warning glare and brought my purse to me so I could blow my nose. Others ventured forward. An attorney pled with me to apologize, because she would put me in jail for contempt. My daughter, who had left the courtroom to call her sister and plan for my bail, came back and asked if there was something she should do. I asked her to contact the media if I went to jail.

I ended up apologizing, and I'm sorry I did because it was not sincere. The courthouse doesn't have my records from five years ago. Our system purges DUIs at five years, even if fatality cases, but not my citation. The County Clerk's office keeps records four years.

That judge's last words to me were, "I advise you to get a good attorney."

I told her I was on disability and could not afford an attorney. She refused to order a public defender for me.

It is now five years and four months since I made that decision to break the law. My next court date is at the end of June.

The lovely judge in this case has been the lowest rated judge in this county for several years.
She is on the ballot for re-election in November.

Considering the circus of errors in this situation, and the fact that none of the people involved knew how sick I was or how much their actions affected me, I wrestled with my willingness to dump my resentment on this judge. In the end, I believe this is where it belongs. The buck stops with her, and she decided to call me a liar when there were people in the building who could have proven I brought my documentation to 'the windows' in 2001. She also refused to allow me to defend myself, or use a public defender, although I qualify for the service.

My campaign has just begun.

Update: This judge was not re-elected in November.

Friday, March 17, 2006

Coddled Insanity

Renee shoved the tank tops aside and pulled a long-sleeved tee shirt from the bottom of the drawer. The out-of-season lecture never lasted as long as the where-did-I-go-wrong martyr fest, and she needed to get out fast. She slapped a band-aid over the new gash on her wrist and poked her arms through the sleeves on her way down the hall.

On guard, on cue, on Renee’s last nerve, her mother looked up from the bible in her lap and hit Renee with the usual question as soon as she entered the room. “Where you headed?”

“To meet Mark. Gotta hurry.”

“It’s ninety degrees outside. You’ll burn up in that shirt.”

“So, I’ll burn up. My choice.” Why couldn’t she have a normal mother, with a normal job, or at least a life of her own?

“People will think I never teach you anything.”

“I’ll tell them I’m adopted. I have to go.” Renee skirted through the room and out the door before the tears or preaching started, wishing she had taken a second to flash the new cut before leaving. They could both suffer.

Worried Mark would sell the Vicodin to the slut at work if she didn’t get there before he left, Renee kicked up to a trot. If he dogged her with that bitch one more time, she’d never speak to him again.

As she rounded the corner and almost ran over Mrs. Lowry, she spotted Mark farther down the block, headed for his car. “Mark, hold on.” She called out, passing Mrs. Lowry without a word. A bonus for Mom. Sympathy when the busybody called to tattle, and an opening for the ever-famous Do-Unto-Others lecture. God, she needed drugs to deal with it all.

“You ass.” Renee stopped in front of Mark and leaned over to catch her breath. “You were going to leave me.”

He opened his car door. “That any way to talk to a friend? Hurry up and get in.”

She ran to the other side. “Is running off without me how you treat a friend?” She asked and slammed her door.

“Told you I couldn’t be late. Try being on time once.”

“Screw you. You sound like my mother. Where is it?”

Mark grabbed her arm and looked at the drop of blood spreading on her cuff. “You’re twisted, Renee. You cut yourself on fuckin’ purpose and think I’m supposed to worry about getting your pain pills to you. That’s insane.”

“Look, ass. I decide when I want to feel pain and when I don’t. Not you.”

He started the car and backed out the drive. “Ever think people might treat you better if you acted like you care about yourself first?” He tossed a bottle of pills on her lap once the car was on the street. “Make 'em last. No more refills on that script.”

“Did you ever wonder what being a drug dealer says about you?” She stuck the bottle in her pocket and threw a wad of cash back at him.

He grinned. “Says I know what feels good to me and want to help my friends feel good too. You know, Love Thy Neighbor, and all that good stuff.” He pulled up in front of her house and she opened the door to get out.

“Yeah.” She giggled. “Love Thy Neighbor. Think I should go inside and bleed Mom to release her anger? Where’d that crap come from, anyway?”

“Bullshit cliches?” He shrugged. “More like coddled insanity, passed down from one crazy generation to the next, if you ask me.”

Who Are You?

There are some of us with no way out. We’ve paid the dues, walked the miles, swung the hammers, carried the loads, jumped through the hoops, and still wound up buried beneath the rubble.

We aren’t lazy. We aren’t trying to get something for nothing. We are trying to get rid of what we have – multiple sclerosis, arteriosclerosis, cancer, AIDs. We’ve fallen and we can’t get up. You find humor in that.

We hurt. And you spit on us as you kick us aside or step over us.

Your prayers haven’t cured us or made us disappear. Your God hasn’t put the goodness in your hearts to help us, to stop blaming us, or to realize you are not better than us because you were born in a healthy body.

Your words and inactions destroy what our diseases haven’t already taken. It’s not enough for you that our bodies have failed us. You aren’t satisfied until we’ve lost our homes and spirits as well.

We’ve done nothing to you. We’ve done nothing to deserve our fate. We don’t want to live and we can’t die. You’ve destroyed our lives and jailed our Dr. Kevorkian, because, after all, you believe you own our souls and the rights to our decisions.

You decide we should live without medical care and pain medications. You don’t care if we have dental care, because you don’t think we deserve food or homes to eat it in.

We’re in your hell. Who does that make you?

There, But For The Grace of God...

I am an ungraced enigma. People waive their preferences for sons and daughters to pray God will not curse them with something like me.

To my face, they promise to pray their God will cure me of being me. Behind my back, they say, “There, but for the grace of God, go I.”

In fairness, I understand the ancient grammar probably feels eloquent rolling off the tongue. I realize the overwhelming temptation for many to mimic without thought, hoping to cash in on the pious reward of transmitting any quote that uses God’s name. I recognize the importance our society places on popularity and the inability to resist jumping on crowded bandwagons.

It isn’t possible, however, for me to understand where a person finds the arrogance to assume God considers a healthy body or a full wallet a virtue, or graced. I might be their test. How will healthy and wealthy people treat me? Will they toss platitudes and prayers my way and tighten their fists around the social programs I need to keep me alive? Do they believe their god made a mistake with me and will be offended if they intervene? Will they close their eyes and pretend I don’t exist?

I was born knowing my purpose. I came into this life happy, understanding, willing to help everyone without assuming their defects are curses from a god. I love everyone, in sickness and health, good times and bad, rich or poor, and don’t have to marry or give birth to them to feel that way. I want to share what I have until a person demonstrates a desire to hurt me, and then, I hold that person responsible, not their god.

I am not unique. Millions of enigmas sit on stifled resources because the self-proclaimed graced don’t want to barter health care and living expenses for the love generosity, wisdom, and experience of the ungraced.

How a person exhibits faith measures character. I am confident that my god graced me with what I was supposed to share with the world. I feel doubly graced with the knowledge that having more than someone else gives me more responsibility, not condemning or gloating rights.

Here, by the grace of your god, am I, asking you to think.