What's That Smell?

I found this picture on Facebook at just the right time. I have no idea who came up with this picture, or the quote. Ever since I saw it, it's become an important mantra for me. I actually turned it into my desktop wallpaper.

I went to visit my husband's aunt and uncle recently. They are in their 80's. If asked, Aunt Ellie and Uncle George will tell you the reason there are no dinosaurs is because of God's flood. They will say this with a straight face, as if no other thought has ever occurred to them.

They believe the Bible is 100% true and don't question anything in it. Everything that happens is part of God's plan. This is their worldview.

This uncritical, unquestioning acceptance of Biblical truth, has turned them into living stereotypes. They watch Fox News and believe without question that Fox is the only source of fair and balanced news. They believe that President Obama was born in Kenya. They live in an alternate reality. Usually, I approach them with the attitude of a cultural anthropologist. I just watch in amazement as they apply circular reasoning and thought-terminating clichés to make sense of the world. Unfortunately, Aunt Ellie opened her mouth once too many times, and I couldn't help myself. I challenged her beliefs. She responded by digging deeper into the crazy.

When I came home from dinner with Uncle George and Aunt Ellie, I was upset. I want to challenge them, explain things to them, teach them the beauty of reality. But, they aren't interested. I wrestle with this. How can you not want to know the truth? The emperor has no clothes. Look! Jesus was not born while Herod The Great was ruler and Quirinius was governor of Syria. Herod was already dead 10 years when Quirinius was governor. Were you born in 1933 when Roosevelt was president and while Truman was president? They cannot both be true.

Except, they live in a reality where both are true at the same time. It made me want to tear my hair out. I was so frustrated after I came home from dinner with my husband's family. Then I saw this picture on Facebook. Talking to Uncle George and Aunt Ellie is like trying to smell the color 9. That explains everything.

Next time we are together, I will keep this phrase in mind. Instead of getting frustrated by their wacky ideas, I'll make a record of them and share them here on my blog. That way we can all get a laugh and I can save my sanity.

Read more...

Call Me An Unholy Roller

I'm not a socially outgoing person. I freely admit, I have taken out my cellphone and pretended to get a call just to avoid talking to people. If I can get away from strangers without saying a word, or even having to wave, I consider this a successful outing. 

I saw them in the park. Two women walking together. Both had hair long enough to sit on. One wore a pale blue kerchief covering her head, and the other wore her hair pinned back with barrettes. They both wore long denim jumpers. They saw me in my powerchair and they practically tripped over themselves to get close to me.

"Have you asked Jesus to heal you?"

"Do you know the Lord?"

Are you fucking kidding me? 

"Do you have a church home?"

"You should come to our church. We have a healing ministry that does miracles."

"Yes we do. You could be walking right now if you had the faith the size of a mustard seed."

"Have you asked the Lord Jesus into your life?"

One woman touched my powerchair! One woman touched my arm! Both women raised a hand in the air and began praying. "Oh Jesus, heal this poor woman. Oh, Jesus, heal her. We speak a healing in the name of Jesus. We rebuke the demon of lameness. We rebuke the demon in Jesus name! Ora-manda-anda hona-krabbandi. Or-han-on-lomoni, lokora-monda..."

What the actual fuck is going on? Why is this happening? I cringed and tried to figure out what to do next. All I wanted, was to go to the park on a beautiful day. Suddenly I was being prayed over like I went to a Benny Hinn revival. The most ridiculous part of this misadventure is, it wasn't the first time. My powerchair is a magnet for super Christians. 

Total strangers have no problem walking up to me and asking if I've accepted the Lord, or if I want to go to their prayer meeting. I've been invited to healing services. They will touch me and pray for me. They will "God bless," me. I want to tell them all to shut up and leave me alone. But, my parents installed Manners in my operating system, and then set an encrypted password so I can't uninstall the program. 

When these two women in the park finished praying, they told me their church raised people from the dead. Excuse me? Raised people from the dead? In 2014? Seriously? And that was supposed to encourage me to go with them to church? All I wanted to do was get away as fast as my batteries would take me. I was so irritated, but I didn't know what to do.

What pissed me off the most was, they didn't see me. They saw my chair and made a list of assumptions about me, and none of them were right. My powerchair is not a symbol. It is a tool. Glasses are for eyes. Wheelchairs are for legs. That's the only difference between them. Would these women have walked over to a person wearing glasses and pawed them? Would they have put their hands on their faces and babbled nonsense in Jesus name? Of course not. But, because I use a chair that makes me fair game?

Assuming I need healing because I am using a wheelchair pisses me off. If I am using a powerchair, I'm having a good day. That means my neuromuscular disease is attacking my legs today. 

What I want to tell people who assume I'm suffering because I'm using a chair is:

If I am using a wheelchair, I can breathe today.

If I am using a wheelchair, I can feed myself today.

If I am using a wheelchair, I can brush my hair today.

If I am using a wheelchair, I can speak today.

If I am using a wheelchair, I can use my computer today.

If I am using a wheelchair, I can see today.

If I am using a wheelchair, I can drive today.

If I am using a wheelchair, I can play music today.

If I am using a wheelchair I am having an absolutely kick-ass, awesome day.

I don't need my legs to work. I need my arms. I need to be able to breathe. I need to be able to chew, swallow, speak... Of all the muscles that muscular dystrophy weakens, my legs are the least important. Wheelchair days are the best days. I can't always see, chew, swallow, breathe comfortably, or move my arms. Days when I can are good days. Having strangers assume I am suffering because I use a wheelchair drives me nuts. If you must assume something about a person with a disability, assume competence. 

Arguh!

</Rant>

Sooner or later, I'll run into more tongue-speaking super Christians who want to touch me and heal me. The suggestion, "Climb out of your chair and praise the Lord just to screw with them," isn't my style. Can you help me figure out what to do next time instead of cringing? What is a polite solution to a rude problem? If you have any suggestions, or just want to commiserate, please leave a comment. Thanks!

Read more...

Divorcing God

When I was a Christianus Sickus, I alternated between asking God for healing, and asking God for strength to endure. I refused to believe my chronic illness was permanent. I looked at all the current scientific research about my illness and studied. If there wasn’t a cure, I was going to find one myself. There had to be an exit. I remember feeling so desperate for a way out that I went half insane. I felt like I was dropped into a deep pit with no means of escape. The life I used to have was gone. I wanted it back. I needed it back.

I started praying, “Lord, heal me.”
Silence.
“Lord, please heal me.”
Silence.
“Lord, I know you love me. Please heal me.”
Silence.

The silence twisted me up inside. I couldn’t understand it. Why wasn’t God answering my prayers. Why the silence? So, I tried something else. “Lord, I want to do your will. Heal me or use me. Tell me what to do.”
Silence.
“How can I do your will?”
Silence.
“What do you want from me?”
Silence

This went on for three years. The more I prayed, the more unhappy I became. People told me God had a plan and if I had faith God would reveal it. Meanwhile, my illness progressed. I felt depressed and hopeless. I read the scriptures people recommended, and felt even more hopeless. There wasn’t a peace that passed understanding. There was an endless silence that left me in tears. After years went by, I got angry. Angry that I got sick and angry that God wasn’t hearing my prayers. If God wanted me to be sick, then I was willing to be sick. I wanted to be a blessed Christianus Sickus, but I wasn’t one. I wasn’t a saint-in-training. I was just me, and I was broken. My faith and my whole life shattered like glass.

 I tried focusing on Christ’s suffering, and uniting my spirit with His suffering. I tried to believe that the suffering of Jesus was beyond anything I could imagine. But, a crucifixion ended his agony. Chronic illness doesn’t always kill you. Sometimes it leaves you alive, but wishing you were dead. I started wishing I would die. My entire life became unbearable. Praying for strength, and healing, only made it worse.

Then I had a flash of insight that changed my entire life. “What if there isn’t a God?” That single thought was like dropping an anvil from around my neck. I felt like I was floating. If there is no God, then praying for healing and strength, and not being healed, or strengthened, isn’t a problem. Maybe my prayers came back return to sender, because no one was listening. If there isn’t a God who planned for me getting sick, then there isn’t anyone to appeal to for a reprieve. If God isn’t real, I don’t have to pretend this is a blessing in disguise. I don’t have to pretend to be someone I’m not. I get to be real. I get to be a human being who is doing the best she can under the circumstances. If there is no God, I can finally be at peace. What if there isn’t a God?

I got terrified by that thought. Of course there is a God. This is the Evil One tempting me. God loves me. I need to get into His word and get right with God. So, I opened my Bible and read it. The entire thing. As I learned more about the God of the Old Testament, I wanted a divorce. That God character was far scarier than I realized. I read about genocides and God demanding the murder of infants. As I read along, I discovered 1 Samuel 15:3-4 was particularly horrifying. Under the 1949 Geneva Conventions, 1 Samuel 15:3-4 is a war crime. Why would I want to draw near a war criminal? After learning about God in the Bible, I wanted nothing to do with religion. Finishing the Bible allowed me to understand that God is imaginary.

Letting go of religion freed me. It gave me peace. I stopped wondering why God allowed this to happen to me. I stopped fearing God’s wrath for not being holy enough. I stopped worrying that I wasn’t doing God’s will for my life. For the first time since my diagnosis, I had something Christianity couldn’t give me: hope for the future.

Read more...

If This Is God's Plan...

Syrupy claptrap irritates me. Every time I look for chronic illness support, I find it. There was a forum I used to read where one participant always signed off, “I thank God for the storms of life. They blow me right into the Father’s lap.”  That particular bit of goo always made me gag. I would scroll past her posts just to keep from reading it.

During my final three years as a Christian, when I was struggling to be a Christianus Sickus, I came across this attitude constantly. It is a good thing that I have muscular dystrophy. God is going to use it to change the world. This is a gift. I heard people tell me this all the time. I tried to convince myself that I actually felt that way. But, I didn’t.

Over and over people told me:

God has a good plan for your life.
God never gives you more than you can handle.

Those two phrases bit into my guts like an electric drill boring straight through me. Every time I heard them, I got angry. Only, I couldn't show it. Pastor R. lectured me about my lack of faith in the Lord. How Pastor R. had the gall to do this is beyond me. Week after week, he never asked how I was doing, how I was feeling, not even how he could pray for me. See, he had the correct answers already and didn’t need input from me. He was trying to mold me into a perfect Christianus Sickus. I don’t think he ever saw me as a person. I was a mythic archetype playing a role Pastor R. designed for me. In reality, I was just me and I hurt inside.

My progressive disease started progressing. Tasks I could do a week ago I could no longer do. My body didn’t work like I expected and I didn’t know how to be ME inside this broken body. I was completely lost and didn’t know what to do next. Like tossing out a life jacket stuffed with rocks, people told me, “This is God’s good plan. You have to trust God’s plan and lean not on your own understanding.”

Every time I heard it I felt anger threatening to explode. A small smoking volcano grew inside. The first time I struggled to dress myself in the morning, people told me about God’s great plan for my life. Pulling a shirt over my head took so much effort, I had to stop in the middle to rest. All I wanted to do was put on a shirt. Just a shirt!

And there was Pastor R. telling me, "Remember, Cathleen, God is in control. You are fearfully and wonderfully made and God has a great plan for your life."

I was diagnosed with progressive, incurable, possibly fatal, muscular dystrophy in my 20's. The diagnosis slammed into my life and blew it apart. God’s plan for my life is for me to lose the use of my own body—slowly, so I can witness my physical decline in excruciating detail. God’s good plan for my life is for me to vividly remember what it felt like before I got sick. What a wonderful plan.

While Pastor R. told me about God’s plan, I had an overwhelming desire to scream, “If this is God’s plan for my life, God can fuck Himself!”

But, I never said it. I wrestled the anger down, choked it back, held my tears until I got home. At home I’d collapse in tears. The pain of my illness was bad enough, but to believe it was part of a deliberate plan hurt a thousand times more.

It took me a week to regain my inner balance. Then I went back to church and was pulled apart again. I endured this torment for three years. Finally I realized, I didn’t need Pastor R. to shepherd me through my illness. What the church had to offer wasn’t helping. It was damaging. I didn't need platitudes and assurances that God was in control. I needed to regain control of my own life. Somehow, I had to find a way to heal myself.

Read more...

Just add sprinkles

I just read this:

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by

habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."


And now I feel ill.

Notice this piece is all about the mother. None of it is about the child. The child who has to have 18 surgeries on her face before she is in third grade. What about her pain? The little boy who  has seizures all day long. What about him? It’s all about the mother. The father isn’t even mentioned. Maybe because when God graces a family with a serious disability the divorce rate is 85%. Sugary sprinkles don't fix the problem.

This essay gets passed around forums. Maybe you've seen it before. When I read the comments about how beautiful and moving it is, I am mystified. How is this poem a comfort? A supreme being who is all knowing, all powerful, all loving, and all merciful, deliberately chooses to hurt children to teach their mothers life lessons. Really?

If someone gave me muscular dystrophy on purpose, I would want them arrested for assault and battery. Am I the only one?

Read more...

Five Ways Atheism Helped Me Deal With Chronic Illness

When I got sick, my church expected me to respond like a living saint. No complaining, no questioning, joyful and reverent… I spent three years trying to live up to their expectations. I went to chapel services and was anointed with oil for healing. As if rubbing salad dressing on my forehead was going to cure muscular dystrophy. The words of comfort they offered were empty. God knows what you are going through. God understands. God cares. Trust in God. Lean not on your own understanding.

Stop. Just stop. I dreaded going to church. Being called Job grated on my nerves. Something had to change. After three years, I decided to stop going to church. I still wanted to hold on to my faith, so I did the one thing no Christian should ever do: I read the entire Bible.  When I started reading, I was a Christian. When I finished reading the Bible, I was an Atheist with a capital A. People assume I am an atheist because I am angry with God for not healing me. That’s isn’t why I am not a Christian. I’m not a Christian because of the verses pastors leave out during their sermons. I read about a talking snake, a magical boat, a talking donkey, giants and unicorns. Many people have written extensively about the craziness that is in the Bible and done a better job than I could ever do. My point is, I read the entire Bible and I was amazed anyone believes this baloney is real. The Bible is wrong about science, and math, and reality. It reads like a book written by desert nomads who were guessing about how the universe worked. It was written by ancient people, for an ancient civilization. It is hard enough for me to imagine life during the American Civil War, let alone comprehend the social and moral rules of a civilization 2000 years gone. Reading the entire Bible cemented my decision to stop going to church.

I stopped praying and started dealing with my new reality face on. Do you know what? It was a relief. Once I embraced atheism, my life improved in these five ways.

1. My emotions belong to me   

By walking away from religion, I freed myself from the pressure to be a Christianus Sickus. Having to be a living saint added a level of pain to my life that I no longer carry with me. When I am sad because my body doesn’t move like it should, I get to feel sad. I get to feel angry and frustrated. I have a progressive, incurable, sometimes fatal, neuromuscular disease. I also have insulin dependent diabetes. Know what? That sucks. I don’t have to pretend I’m OK. I don’t have to put on a happy smile and go to church, nod and smile and laugh when people call me Job. I just get to be me.

2. There isn’t a deeper meaning to chronic illness

I don’t have to search for a metaphysical reason why I have chronic illnesses. I don’t have to figure out what a deity expects me to do with it, either. Not everything that happens to me has a higher purpose. Chronic illness has no higher meaning for me than falling on ice. Why did I get sick? Because I live on a planet where sometimes the lion catches the gazelle. There is no reason why this happened to me. I just know I didn’t cause it.

3. This is not part of a deity’s good plan for my life

If someone deliberately gave a person muscular dystrophy and diabetes as part of a master plan, they would be evil. Progressive, incurable illness, where you get to helplessly watch your body fall apart and then die, is a cruel fate. I don’t have to pretend it isn’t cruel. What is happening to me is tragic, but it isn’t anyone’s fault. A deity didn’t cause this any more than I did. Disease is not part of a master design, but a battle we human beings have been fighting and winning with science. When I inject insulin, I don’t thank a deity. I thank Dr. Banning and Dr. Best. I thank science I have insulin. It is because of science that I am alive.

4. I don’t have to pretend this is a blessing in disguise.

If a mass murder was given my illness as a punishment for just one week, it would be cruel and unusual punishment. Chronic illness is ugly. It makes no sense. Making sense of nonsense and accepting the unacceptable is a way of life for me. This is not a good thing pretending to be a bad thing. It is a bad thing. I don’t have to paint chronic illness with pretty rainbows. I can face reality with courage and truth.

5. I’m responsible for how I respond to my chronic illness

This is a huge gift to me. I’m free to respond to how my illness impacts my body, cognitive abilities, and emotions. I don’t have to wait for rescue from on high. I can rescue myself right now. My life is not over. It’s different from what I expected, but still worth living. I’m happier now than when I was a Christian. The enjoyment I get out of life is simpler and more pure. It’s not hemmed in by platitudes. Life is messy and doesn’t always make sense. That doesn’t mean life isn’t good.

Read more...

I'm Not An Afflicted Saint

I wasn’t raised a Christian. My boyfriend Alex was a Christian, and when I married him I converted. We attended a mega church. For me, becoming a Christian was akin to learning to speak Zulu and struggling to learn click consonants. Everything was foreign to me, so I immersed myself in Christian culture. I read the Bible, Christian books, listened to Christian music, and went to church twice a week. I attended Bible study groups and conferences. Although I am embarrassed to admit this, I even wore cringe-worthy Christian T-shirts. At our mega church, I made new friends, joined the worship team, and played violin during services. I did all I could to be a faithful Christian wife and mother.

Then, I got sick. Nothing in my past prepared me for the shock and fear I felt when my health evaporated. My whole life was set ablaze. I had so many questions. What is wrong with me? Does anyone know? Will I get better? Why is this happening to me? I couldn’t make sense of anything. Between doctor’s appointments, I went to church looking for comfort and peace. 

What I found at church confused me as much as getting sick. My nickname, I am not making this up, was, “Job.” As in, “Hi Job, I’m praying for you today.” I felt like I was on display in a holy terrarium. I am a shy person by nature and all the attention made me feel like a side show act.

People asked me, “How has your illness strengthened your relationship with the Lord?” No one ever asked me if my faith was weakened, or if I was struggling. I was told, “God wouldn’t allow this much trouble in your life unless He planned on giving you the strength you need to handle it.” I heard a lot of holy platitudes about God’s comfort, but when I prayed there was nothing there.

I prayed for healing. No. I begged and pleaded and cried and wailed and fasted and prayed and… Nothing happened. I read the Bible and believed that God could heal me. I trusted and trusted and listened and believed and… Nothing happened. There wasn’t a flash of insight, or a quiet peace that passed all understanding. There was just the anguish of an unknown illness, and a church full of people who wanted tickets and front row seats to my struggles.

I learned quickly that expressing real distress and pain was not allowed in church. Instead, I had to become a Christianus Sickus and follow the unwritten rules.

The Christianus Sickus Ten Commandments

1. Thou shalt be grateful for your afflictions

    It is a holy blessing to be a Christianus Sickus, a sure sign of God’s favor, for He only prunes those He loves.

2. Thou shalt be full of peace

    A Christianus Sickus receives the Lord’s chastisement with grace and prayer.

3. Thou shalt be silent

    A Christianus Sickus is quiet and reverent in her suffering

4. Thou shalt not complain

    A Christianus Sickus is continually rejoicing always in her heart, for this life is short and the blessings of eternity are assured.

5. Thou shalt be happy

    God shows his mighty power through a Christianus Sickus, giving her the strength to be joyful in her suffering.

6. Thou shalt feel blessed to be sick

    A Christianus Sickus is closer to God because she can truly share in the suffering of Jesus.

7. Thou shalt be an inspiration to others

    A Christianus Sickus is overflowing with the Holy Spirit and uplifting at all times.

8. Thou shalt be a prayer warrior

    To be in the presence of a Christianus Sickus is to be closer to the Lord, because her prayers have more power.

9. Thou shalt not ask, “Why me?”

    A Christianus Sickus is not concerned with her own pain. Instead she is to ask why God allowed Jesus to suffer in her place.

10. Thou shalt evangelize

    It is the responsibility of a Christianus Sickus to use her affliction to share the Gospel of Jesus Christ with the world.

People at church treated me like an afflicted saint and expected me to act the part. I was cast in a role I never auditioned for and didn’t know how to handle the pressure. The music director in particular took it upon himself to shepherd me. By shepherd, I mean beating me down with guilt. Pastor R. called me into his office and forced me to listen to him tell me I wasn’t showing faith in God. He told me I had a complaining spirit. I was selfish and too concerned about my illness. Didn’t I realize my light and momentary afflictions were achieving for me a glory that far outweighed any pain on earth? Perhaps if I was more holy, God would heal me.

I wanted to yell, “Screw you! Shut up and leave me in peace!” But, I didn’t say that. I didn’t say anything. I just listened, and nodded. I felt stripped, flogged, and dipped in acid. I felt ashamed that I wasn’t a good enough Christianus Sickus. After church, I went home, got in bed, and cried.

The pressure to conform shredded me inside. Human questions like, “Why me? What did I do to deserve this?” stayed bottled up inside. My entire world fell apart and I was expected to say thank you. Thank you God for your great plan. Only, I couldn’t bring myself to say it. I wanted to say, “This hurts. I don’t understand why this is happening to me.” I wanted to say, “I don’t know how to live with this.” I wanted to say so many things, but I couldn’t say a word. My church turned me into a Christianus Sickus and denied me the right to be human.

Read more...