Thank Science I'm Alive

I'm still alive. This amazes me at least once a day. Sometimes, I wake up in the middle of the night because my insulin pump tubing twisted around my arm. When this happens, I look down at this little machine and thank science I'm alive. This little mechanical wonder pumps insulin into my body, because scientists and engineers worked together to make this amazing device. To the people who invented the insulin pump, thank you.

Fifteen years ago, I had a tumor the size of a golf ball wrapped around my aorta twice. 

To the surgeon who cracked my chest and spent almost 10 hours carefully removing the entire tumor, thank you. 

To the anesthesiologist who kept me alive through the surgery, thank you.

To the nurses who looked after me, thank you.

To the pharmaceutical companies who created the medications and equipment to make that surgery possible, thank you. 

To my amazing doctors who have kept me alive this long, thank you. I am 15 years into the bonus round of my life, thanks to all of you. I am so grateful people study science instead of theology. If all I had to rely on was hopeful words and salad dressing sprinkled on my forehead, I'd be dead right now. Instead I'm still here, cancer free and amazed. Thank science I'm alive!

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Chronic Illness And Anger

When I was still attending church and trying to adjust to a chronic illness, anger was unacceptable. To feel angry was to deny God’s sovereignty in my life. I was told to submit to God’s will and trust Him. The mental gymnastics required to feel angry, but express happiness, tore me apart inside. 

What I wanted to say, needed to say, remained bottled up. I smiled on the outside. I listened to the scripture verses people quoted. I listened to the holy cliches. The more I listened, the more conflicted I felt. I felt crazy, until I left religion. Funny how letting go of my faith allowed me to gain my sanity.

I am so glad I don’t have to pretend to be someone I’m not anymore. Truth is, I'm angry. All day long I see people who don’t have to deal with muscle spasms and weakness. I vividly remember a life I no longer have. Of course it makes me angry. I have one of those neurological nightmare illnesses. The kind of thing people fear getting. What helps me deal with my anger is acknowledging how I feel without sprinkling it with sugar.

I’m angry, but the Lord knows everything.

I’m angry, but I know God has a plan.

I’m angry, but I shouldn’t feel that way.

No more of that. I’m a human being and I get to feel angry. When I feel angry, I don’t have pretend I don’t feel it. Instead, I recognize that feeling pissed off over chronic illness makes sense. Sometimes I get mad because I have to deal with symptoms, but most of the time I get pissed off over the word, incurable. I hate that word. Incurable. 

Synonyms: Remediless, Unrecoverable, Cureless, Hopeless, Fatal

Venting anger by yelling and screaming tends to make me more angry. Some people can vent their anger and get it all out, but that doesn’t work for me. I just explode. The safer way for me to get rid of my anger is by defusing it. I can write about feeling angry, or listen to angry music. I can play violent video games. When I am angry, I express it without fanning it into a rage. I don’t want to spend the rest of my life having a temper tantrum. I could. I have a thousand reasons why I could yell and scream all day long. I just don’t enjoy feeling angry. It’s exhausting. 

I’ve learned to express my anger for a while, and then back away from it. I back away by doing things I enjoy. I change the music I’m listening to from angry to quieter and more upbeat. I’ll play a different video game, one with less violence, and more laughter. I’ll binge watch something funny on Netflix. Other times I back away from my anger by spending time with friends and family. Or knitting. Or being with my dog. Or reading a good book. Or just sitting outside in nature. 

I give myself permission to lose my temper. I also give myself permission to quiet back down. Giving myself permission allows me to live a quieter, and much more peaceful life. Chronic illness isn't going anywhere. It's not going to stop making me angry. It's not going to stop me from enjoying my life, either.

What do you do with your anger? Do you have any special ways of defusing your anger?

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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!

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An Open Letter To Parents Against Vaccination

An Open Letter to Parents Against Vaccination,

You love your children. I don't doubt that. The first moment you held your child is etched into your mind. You're choosing not to vaccinate because you are afraid vaccines aren't safe. You've read alarming stories on the internet. You've seen celebrities talk about the dangers of vaccines. Maybe you think they hurt more than they help.

But, there is something else to consider when you think about vaccinations.

When you think about vaccinations, I want you to think about polio.

http://upload.wikimedia.org/wikipedia/en/2/20/Iron_lungs.JPG

Inside every iron lung is a child. A child who was loved as much as you love your child. No longer able to breathe on their own, they lie still inside a machine because of polio. In the early stages, polio cripples the muscles around the lungs. Polio is devastating.

When you think about vaccines, ask yourself, "Do I want children crippled once again by a disease science already conquered?" 

Or do you want to think about this image instead?

http://www.classbrain.com/artteenst/publish/citation_polio_vaccine.shtml

The vaccine came too late for this man, but not too late for your child. This vaccine you are refusing was celebrated around the world. Before the vaccine, everyone knew polio, and everyone knew what it could do. When that vaccine was announced, parents took their children by the hand and said, "Not my child."

http://www.historyofvaccines.org/

They lined up in towns and cities to receive the polio vaccine. Not as a fearful poison, but as a triumph of science and hope. Vaccines aren't here to hurt your child, but to save them. When you were growing up, did you have friends who had polio? Probably not. Because you and your friends were vaccinated against polio. Vaccines saved you, and me, from polio.

Another vaccine you're refusing to give your child prevents a disease called diphtheria. We can go to Wikipedia and look up diphtheria. We can learn all about it in clinical terms. Or we can look at this:

http://lincolnlog1972.blogspot.com

And we can look at this:

http://lincolnlog1972.blogspot.com

Harriet, George, Joseph, William, Edmond, Lillie, Francis and Fredrick Kershaw all died within 17 days of each other from diphtheria. Lillie and her brother Francis died on the same day. Eight children, loved as much as you love your child, all gone in less than a month.

What did their parents go through as they buried child after child? I can't imagine. I don't want to imagine. That's why I vaccinated my child.

What would Joseph and Julia Kershaw say to you about diphtheria, if they knew there was a way to prevent it, and you refused to vaccinate your child? I think they would cry, "Why not?" 

Do you think the Kershaw family wished there was a diphtheria vaccine? It came in the 1920's. Too late for the Kershaw children. But, not too late for these kids.

http://www.historyofvaccines.org/

The diphtheria vaccine didn't come too late for our kids. Vaccines are amazing, but they only work if we use them.

Outbreaks, though very rare, still occur worldwide, including in developed nations, such as Germany and Canada. After the breakup of the former Soviet Union in the late 1980s, vaccination rates in its constituent countries fell so low that there was an explosion of diphtheria cases. In 1991, there were 2,000 cases of diphtheria in the USSR. By 1998, according to Red Cross estimates, there were as many as 200,000 cases in the Commonwealth of Independent States, with 5,000 deaths.

Don't you see what caused diphtheria to return? A lack of vaccinated children. Do you want to go back to a time where classmates were crippled from polio, and entire families died from diphtheria?  Or do you want to move forward into a world without childhood diseases? I know what world I want for my child, and for your child. 

Choosing to vaccinate your child is a big decision, and I know you're afraid. Please look at these pictures again and think hard about vaccines. For more information, get the facts. Please don't fear vaccines because it is trendy, and celebrities talk about vaccines like they are going to hurt your child. If you must be afraid of something, be afraid of polio and diphtheria. Then do the right thing for your child. I'm glad I did.

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Preparing for Chemo

Preparing for chemotherapy probably sounds like preparing to die. The word chemotherapy is frightening. It conjures up images of hair loss, vomiting, and pure misery. Truth is, chemo sucks, but if you're prepared it sucks a lot less.

How do I know this? Because I've been a chemotherapy patient since August 2005. I started with moderately high dose IV chemotherapy on a three week cycle. This lasted until January 2007 when I switched to weekly pills at home. After 23 cycles of IV chemo, and over 365 doses of weekly chemo, I'm an expert at preparing. Tomorrow is chemo day. Since I'm preparing for it, I thought I'd share what I've learned.

Preparing for Chemo

Every chemo protocol is different. They don't all have the same side effects, but a lot of these drugs cause nausea, fatigue, taste and smell changes, and hair loss. So, I'll focus on those.

If your protocol requires several IV cycles, get a port. I waited to get a port and scarred the insides of my veins. IV's don't work for me very well anymore. Everything about ports will be carefully explained to you by your doctor, so I won't do that here. Wait, did I say everything? I meant almost everything.

What no one will tell you is the rubber inside the port might make a popping sensation the first time it's accessed. It didn't hurt, but the pop scared the shit out of me! So, if it happens, don't freak out like I did. It only happens the first time, after that it's fine. The nurse cleans your skin, pokes the needle in the port and it's over. It's much easier than an IV. If you're needle phobic, or sensitive to pain, ask for Emla cream. It numbs the skin like magic. Remember, you don't have to watch what the nurse is doing. Hold still and look somewhere else.

The process of getting chemo might take hours. Sitting in a recliner in a treatment room, attached to a pole, with a pump and IV bags, is stressful. It is also boring as hell. It's not stuck in an airport boring. I mean it is fourth grade, staring out the window on a spring day while the teacher drones on about random bullshit, boring. If you don't have a tablet, now is the time to buy one, or borrow one. Playing a thousand games of Angry Birds, or watching movies, will help with the boredom and stress.

Nausea is a common side effect of many drugs. It's also a scary one because we've all puked and we know it sucks. Your doctor will prescribe a combination of anti-nasuea meds. Some will go in your IV before the chemo meds. Some you'll take home. Once you get home, take your anti nausea meds before you feel sick. If you wait, you'll puke. Trust me. I made that mistake for you so you won't have to. The anti-nausea drugs work amazingly well. If you're still nauseated, talk to your doctor. They'll change the drug combo and help you feel better.

Fatigue after chemo may be profound. I slept off and on for at least five days after each treatment. It might have been from the anti-nausea meds, or just the powerful medications. But, I was knocked on my butt for days. To deal with fatigue, plan for it like you would a trip: pay bills, do laundry, clean the fridge, arrange child and/or pet care. Next, gather food (suggestions later) and prepare a nest. It might be on the couch or your bed. Before your first treatment, figure out a quiet place where you can watch TV and sleep for days on end if necessary. You might be down for days, or up and around the next day. Either way, plan on resting. You've earned it.

Taste and smell changes. Not all drugs do this. If yours does, I'm not gonna lie to you: it sucks. I was smelling phantom scents: chemical smells and rotting smells. Fortunately for me this only lasted a few days after treatment. If you're dealing with altered sense of smell, stay away from scents you normally like. The hand lotion you love will be tainted and you'll hate it later. Avoid strong cleaners, fabric softener, and laundry soap. Remember, the weird smells aren't real. Hopefully it will be only temporary.

Taste changes also suck. My chemo drug made me feel like I was eating metal shavings. The metal taste couldn't be masked with toothpaste or mouthwash, because the foul taste had nothing to do with my mouth. It was in my brain. Sucking on lemon drops helped. Mint made it worse. But, that's me. You'll have to figure out what helps you.

Food choices while recovering from chemo also matter. Don't eat anything you normally like. Once you eat it with an altered sense of taste and smell, you'll end up hating your favorite food. Stick to bland things like crackers, rice, vanilla pudding, and vanilla wafers, with tofu or chicken breast for protein. Ginger ale helps, too.

While I was going through IV chemo, I slept six hours, woke up and ate, slept ten hours, and ate again. It was a week long haze of grazing and sleeping. Then I'd emerge from my chemo cave. My sense of taste and smell was back to normal. The nausea and fatigue was better, too. The worst of it passed and for the next few weeks, I felt much better.

Hair loss didn't go away, though. No one told me my scalp would hurt. My head was sensitive to touch. I chose to wear the softest knit hats possible. What you chose is up to you. Your hair will grow back. Promise. Mine did. We changed the medication from IV to pills and I got to grow my hair.

My weekly chemo routine is pretty similar, only feeling shitty lasts one day instead of the entire week. In a few hours, I'll be back in the chemo cave. Tomorrow I'll feel sick to my stomach and tired. I'll bolus a crap load of insulin through my pump while I eat crackers and drink ginger ale. After 14 hours, I'll eat a bland dinner. The next day I'll wake up feeling much better.

Chemotherapy sucks. There's no getting around that. But, I've learned that planning ahead makes it suck less. I look at chemo like a tollbooth on the highway of life. It's the price I pay for survival. After over 365 chemo days, it's still worth the fee.

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Homeopathic Dilution Delusion

My first introduction to homeopathy was at a summer camp when I was a kid. This wasn't a normal summer camp. It was a vegan, granola munching, Birkenstock wearing, tie-dyed, folk dancing, hippy camp. How I ended up there involves my ex-boyfriend getting me a summer job at the camp. I worked in the kitchen making vegan food and homemade granola. Learning how to cook for 350 people at a time was fun, I have to admit.

One of the counselors was big into natural healing and explained homeopathy to me. She had all kinds of remedies in little bottles. She would put a drop of this or that in her mouth. I thought it was weird. Then again, I thought Cheryl was weird. And that's saying something considering the entire summer camp was straight out of the musical Hair.

Maybe because Cheryl introduced it to me, I've always viewed homeopathy as flaky. I didn't bother learning more until I got sick. There's something about the word incurable that sets my teeth on edge. Incurable and hopeless are synonyms in my thesaurus. It's hard not to let them become synonyms in my life. I fight harder than words can say to keep that from happening to me.

Western medicine has no cures for muscular dystrophy or type 1 diabetes. I would like to stop giving myself shots of insulin. I'd much rather drop magic water in my mouth. Insulin is expensive. Wouldn't it be great if we could dilute it and make it last longer? Maybe we could even make it more powerful.

The founder of homeopathy, Samuel Hahnemann (1755 - 1843) believed that the process of succussion activated the "vital energy" of the diluted substance,^[1] and that successive dilutions increased the "potency" of the remedy.

We can also assume that Samuel Hahnemann had never heard of antibiotics, or insulin, or chemotherapy, or anesthesia. So, we can forgive his ignorance. Cheryl the hippy camp counselor has no excuse.

The idea that successive dilutions increase the potency of the remedy makes no sense. Take two aspirin and crush them into powder. Put the powder in a swimming pool. Pull out an eye dropper full of water from the pool, and put that in another swimming pool. Then repeat the process. Diluting eyedroppers full of water, again, and again 60 times. And poof! You have super charged, extra powerful, homeopathic headache banishing medication.

Or, maybe you have an eye dropper full of water.

Maybe it's how they shake the remedy that makes it work. Shaking can make a huge difference. Insulin N is cloudy when shaken. It looks like milk. Rolling the vial in your palms mixes the insulin so it can be used. That kind of mixing is lifesaving. A unit of insulin (1/100th of a cc) dropped in a five gallon bucket of water, does not make the diluted insulin more powerful. Any kindergartener could do an example with one drop of food coloring in a bucket of water. After enough dilutions, no color remains. No medicine remains, either.

Homeopathy should have disappeared a hundred years ago, but it's still around. People like kooky Cheryl are still buying water in fancy bottles. They're still claiming that western medicine is evil. To me, what's evil is selling water and calling it medicine.

How about we force companies to put a label on homeopathic remedies that says in bold red letters, "THIS IS WATER AND NOT MEDICINE. PUT YOUR MONEY BACK IN YOUR WALLET." Maybe that would be a good place to start. But, then again Cheryl would chant over the bottle, and wave incense in clockwise circles, and play a finger cymbals. Ding! Now it's medicine. Good luck with that, Cheryl.

Stupid. More incurable than diabetes.

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The Atheist Closet

I have religious family members. Actually, that's not true. My husband Alex has religious family members. It's one thing to tell your own Aunt Tilly that you're an atheist. It's a whole different story when it's your spouse's aunt.

My own extended family isn't close. I hardly know my cousins. Meanwhile, Alex's family seriously reminds me of the Apple Family. Alex is close to his enormous extended family. I know his aunts, uncles, cousins, second cousins, third cousins, cousins in Europe... On both sides of his family, they are a close knit bunch.

It's a loving family to be added into. I enjoy spending holidays with Alex's family. We went to his cousin Lori's house every Thanksgiving for years. We enjoyed great food and laughs. I love being with my husband's family.

Only... Only, I'm in the atheist closet with them, especially with Alex's favorite aunt and uncle. Aunt Ellie is 81 and Uncle George is 85. They are devoted Christians. That's putting it mildly. Let me try that again. They are card carrying members of the religious right. They watch Fox News. They read John Hagee and love Billy Graham. This is who they are. Like the mechanism inside a watch, this is what makes them tick.

That being said, I think Aunt Ellie and Uncle George may be the kindest people I've ever met. They are giving, loving, and fun to be with. They make me laugh, and smile. They make me feel loved. We visit their lake house several times every summer. Being with them makes me happy.

Aunt Ellie and Uncle George have a son, Tim. Tim strayed from the church. This broke their hearts. I can see it in their eyes, and hear their pain when they talk about him. They believe that Tim is on a path that leads to destruction. Before meals, Ellie and George pray for Tim. They pray for him to return to the faith before it is too late.

Obviously, Tim is somewhat estranged from his parents because of this. I don't know what Tim believes or doesn't believe. He's never told me if he's an atheist. I just know that Aunt Ellie and Uncle George are heartbroken because he's not a right-wing republican Christian like they raised him to be.

After watching how they responded to their son, I knew telling them I'm an atheist would be a disaster. I would become their project. They would want to fix me and help me find the Lord. Everything about how we interact would change. I couldn't deal with that. It's easier for them to believe what they want about me and be a chameleon.

From Christian Graphics and ironic as all hell

While they bow their heads in prayer, I don't join in. I tune it out. While everyone says, "Amen," I keep silent. I used to mumble, "Ramen." But, I don't do that anymore. Their prayer time belongs to them and it has nothing to do with me. Religion and the Bible makes sense for them. They are in their 80's. Nothing I say will change their minds about their beliefs. What I say could forever change their relationship with me and I don't want that to happen.

I definitely don't want to drive a wedge between Alex and Aunt Ellie and Uncle George. They helped raise Alex when he was little. These two people are more important to him than his own parents. Telling them I'm an atheist would just hurt them. I can't do that.

I'm in the atheist closet with them, but it's by my choice. Not everyone has to know I'm an atheist. Do I feel like I can be myself around them? Yes. Even though I don't share their religion or political views, I share their love for nature and the beauty of the woods. Maybe if they were pushy and quoting the Bible every few minutes it would be different. All I deal with are prayers before meals, and brief morning devotions over breakfast at the lake, and that's it. No Bible quotes. No pushy invites to church. Nothing else. Just a few minutes of religion a day is no big deal. I can live with that. Their religion works for them. The atheist closet works for me.

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Feeding The Health Care Dragon

Health care in the USA works perfectly, if you never get sick. It works very well if you get an ear infection and need antibiotics. If you fall down the stairs and break your leg, the current American health care system will make sure you get surgery and a cast. It will even cover your crutches and physical therapy afterward. Your deductible will leave you with a massive hole in your wallet, but you will get better. Next year will be better.

Our health care system is designed for people who don't need health care. Just like car insurance, we pay a premium as a bet against needing an insurance pay out. Most people will get through this year without spending more than a few hundred dollars out of pocket for health care. The current system works, except for anyone living with a chronic illness. Then everything falls apart.

I have a deductible I need to meet before my health insurance covers my needs. Once I meet the deductible, my insurance covers 80% of my health care and I am responsible for 20%. It is now September. I have yet to meet my deductible. On my insurance plan, prescription drug costs do not go  toward the deductible. Neither do co-pays when I see a doctor. Nor do lab tests. What a great plan this is... for the insurance company.

Last year I didn't meet my deductible at all and paid 100% out of pocket all year. High deductible health care plans are a disaster for anyone with a chronic illness. I spent all last year skipping doses and cutting them in half so I could afford my medication. This year I have a lower deductible, but I'm not sure I'm much better off. Even with insurance, health care for a chronic illness will slowly bankrupt a family.

How can this be? We have insurance. It's supposed to fix everything. Well, here's what it looks like at my house.

To see a specialist, the co-pay is $50.00 Meaning, I have to pay $50.00 before the doctor will talk to me. The doctor fills out four prescriptions. One drug is Tier 1. One drug is Tier 2. One drug is Tier 3 and the last one is Tier 4.

 What are these tiers I'm talking about? Drugs are sorted based on how cheap they are to sell. Generics are either Tier 1 or Tier 2. Tier 1 drugs co-pays are about $4.00 to $5.00. Tier 2 drugs are $10 to $20.  If all medications were Tier 1 or Tier 2, health care would be affordable. But, they aren't.

The Tier 3 prescription is a brand name. Not all drugs have generic equivalents. Humalog insulin and Novolog insulin have no generic. People who use insulin are stuck with a Tier 3 or worse Tier 4 co-pay. For me, insulin is $100.00 after insurance. My insulin is Tier 3. Now I have one more drug to pay for. It's Tier 4. It costs me 150.00 a bottle.

In one week, I've spent $50.00 on a doctor and $265.00 on medication. That's $315.00  Ouch well, that sucks. At least next month will be better.

Unless I see two specialists next month. And my medication costs double. Now I've spent $630.00 on health care. Then the next month is back to one specialist, but none of the money I'm spending is actually going toward my three thousand dollar deductible. Money is being sucked out of my wallet along with an insurance premium on top of it. It feels hopeless and is hard to face month after month, year after year.

I pay an insurance premium so I can receive a discount on my medication. Without the discount, I cannot afford my medication at all. It's too expensive. In January 2013, I went to the local pharmacy to pick up a box of insulin pens. I was told my out of pocket was $734.00. I burst into tears and left the pharmacy without insulin. This year is better, but not as good as it should be. I can't believe the best system the United States can come up with leaves people choosing between medical care and the electric bill, month after month, year after year.

The health care dragon is never satisfied. I've poured every last penny into its roaring mouth and it still wants more. If you live with a health care dragon, please tell me about it in the comments. How do you manage to pay for it all? Have you had to choose between health care and food, health care and utilities, health care and the mortgage? If you have, you're not alone.

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Talking about chronic illness

Don’t talk about it. That is an unwritten rule about chronic illness that I have trouble dealing with. If I bring up my chronic illness, I make other people uncomfortable. If I don’t talk about it, I make myself uncomfortable. Sometimes I want to give voice to my concerns and struggles. Only, I learned a long time ago that no one wants to hear it. To keep peace, I keep quiet.

Talking about chronic illness makes some people feel uncomfortable. I have one of those scary neuromuscular nightmare diseases. It’s the kind of thing that almost never happens to people, the kind of disease that people fear. No one wants to think about becoming debilitated. We want to be independent. Even a toddler wants to do things for herself. Losing independence is frightening. I understand why my illness scares people. I understand why talking about it makes people feel vulnerable and frightened. At the same time, THIS is not imaginary for me. THIS is the most real thing in my life. It’s here in my face, 24 hours a day without a moment off. And I can’t talk about it.

I understand why able bodied people don’t want to hear about disability. If a disabling disease can knock you over, that means it can knock me over, and… and I don’t want to think about that. So, don’t talk about it. As if by keeping silent I can pretend THIS isn’t real. Except for the weakness in my arms and fingers. The insulin pump in my pocket beeping. I have medical devices and medicines that keep me alive but never make me well. Sometimes I wish I could just think myself well. Mind over matter, believe you will be better and presto! Instant health in a minute. Unfortunately, reality doesn’t work that way.

I took a few weeks off from my blog because I got depressed. Depression and chronic illness go together. If I didn’t get upset about perpetual illness, I wouldn’t be human. Because I am human, I am able to conceptualize what life would be like without a chronic illness, only I am unable to have that life. Everywhere I go, I can see other people who don’t struggle with their health. I vividly remember what life was like before I got sick, and sometimes I miss that life so much it aches. I have become old before my time, aware that the sand in the hourglass is falling faster for me than other people. Most days this makes me more aware of how precious life is. Other days, I just get sad inside. When I feel sad inside, I back away and pause to regroup.

During my blog break I took some time to breathe and center myself. I don’t have health. That doesn’t mean I cannot be well. Wellness has more to do with my coping abilities than physical health. Focusing on what helps me cope—reading, listening to music, playing video games, writing, spending time alone in nature—doing these things help me rebound. Talking about chronic illness helps me cope. I need to know that I’m not alone. I need to know that there are other people who wake up, look in the mirror and wonder, “What the hell happened?” I need to know that sadness is normal and makes sense sometimes. I need to know that it is OK to not be OK.

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When Chronic Illness Makes Marriage Lonely

My dog was bitten by a tick. We used tick bite preventative medication, but she still got bitten. One little bite left my dog with a high fever, lame in her back legs, and so weak she could barely walk from the living room to the kitchen without stopping to rest. Our vibrate, happy, full of energy dog was knocked down flat.

My husband reacted with frustration when he couldn’t make Daisy walk to the back door. I didn’t react that way at all. I knew down in my gut what it is like to have trouble walking from the living room to the kitchen. I knew exactly what it felt like to have weak muscles that don’t work. Instead of getting angry, I was able to coax Daisy one step at a time.

As much as I love Alex, he doesn’t get it. He has no idea what I go through, even though we’ve been married for 25 years. I wish I could help him understand. Years ago I introduced him to the spoon theory. It’s an interesting way of explaining chronic illness. Still, Alex cannot understand what it is like to be weak inside his own body. I can tell him, “I’m low on spoons.” And it helps, but not enough.

Because I have good days mixed in with bad ones, I think Alex gets confused. Yesterday I had energy. Today I don’t. Tomorrow? Well, I will find out tomorrow. There are times when I wish I could zip Alex inside a suit that gives him my chronic illnesses for a week. Just one week would help him get it. Until that suit is invented, he’ll have to guess. Since he can’t feel what I feel, he guesses wrong.

Alex struggles with empathy. He’s not a “feeling” kind of person. If the pipes in the bathroom need replacing, he can knock out the wall and replace them. He can cut cement board and rebuilt the shower. These are the things he’s good at. He’s not good at figuring out how he feels, or how other people feel. He’s not good at showing empathy. Alex knows our dog is hurting and is worried sick. He knows I’m struggling and is worried, too. But, sometimes he responds with anger when compassion is what is needed most.

Yelling at the dog for not being able to walk out of the bedroom isn’t going to help. Stroking the dog’s head, talking softly, praising Daisy for each step, telling her how proud you are of her, this helps. Kindness doesn’t come naturally to Alex. This has caused tension in our marriage. Sometimes I’d like a compassionate response, but what I get is a snappy comment, or a dismissive wave.

I’m not saying Alex is a brute, because he’s not. He can be thoughtful and sweet and generous. The only problem is, he can’t emotionally put himself in my situation. It’s tough for him to work out what I need. I’ve trained him to ask how I am doing, and to respond with, “I’m sorry.” Sometimes, just hearing that he cares helps. Because he does care, but Alex is a nuts and bolts kind of guy. If he can fix a problem with tools, he’s all set. Chronic illness requires tools he doesn’t have. He isn't interested in getting new tools, either.


Alex isn’t interested in learning about my illnesses. He’s not interested in what I need to do to look after myself. Alex isn’t going to hold my hand and tell me it’s going to be OK. When I had chemotherapy at a treatment center, Alex drove me to my appointment, dropped me off in the parking lot and left. He did this for 18 months. It never occurred to him to sit with me. In the treatment center, I watched couples hold hands and talk. I sat in a chair alone for six hours. Alex wasn't there.

The last time I had surgery, he didn’t wait in the hospital waiting room. He didn’t even want a phone call afterward. I drove myself home a few days later. When I need his compassion most, he’s not there for me. It breaks my heart. I want to fix him, but I can't.

Alex doesn’t get it. He doesn’t know how to respond. He built a wall between us where he can pretend there is no chronic illness, and I deal with it all by myself. I can share my whole life with him, except for my chronic illness. I wish I could share my struggles with Alex, but I can’t. Even though he is my husband, and I love him, when it comes to chronic illness, I’m alone. And I am lonely in my marriage because of it.

If your significant other doesn’t understand what you’re going through, you’re not the only one. I wish I could say your significant other will get it. I wish I could say it will get better. The hard truth is, it might not get better. Sometimes feeling lonely is something you get used to, just like chronic illness.

If you have any suggestions on how I can handle this better, or just want to vent about your own situation, please leave a comment. Thanks.

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Accepting the Unacceptable

Chronic illness requires us to accept the unacceptable. It is unacceptable to have an incurable illness. It’s unacceptable that science can’t fix what is wrong. It’s unacceptable that treatment is overwhelmingly expensive. In the USA, chronic illness vacuums every spare dollar and it still isn’t enough. Everything about living with a chronic illness is unacceptable. And yet, we still have to accept it. Rage, crying and despair doesn’t change it. It’s here and not going to go away. Accepting the unacceptable is one of the toughest struggles we face.

One thing that has helped me is learning not to obsess. I don’t think about diabetes every five seconds. I would go insane if I did that. Instead I think about diabetes only when I need to deal with it. When my insulin pump runs out, then I think of diabetes. Before I eat I have to test my blood glucose. I think about diabetes when I test. I think about diabetes when I bolus insulin before eating. I think about diabetes when I have to deal with it. The rest of the time, I live my life with diabetes in the background.

Getting to this point wasn’t easy. When I was first diagnosed with Type 1 diabetes, I freaked out. I stayed freaked out for the first year. The list of possible complications from diabetes is long and terrifying. I imagined them all happening to me, and tried to figure out how I would deal with them when they did. I created a mountain of fear and buried myself under it. Then I remembered I have to deal with problems when they happen, not before.

I treat my autoimmune form of muscular dystrophy with weekly chemotherapy. This chemotherapy drug causes cancer in humans. It’s a known side effect. Every time I take this medication I risk giving myself cancer. What a terrifying predicament to be in. If I stop taking my medication, I’ll die. If I keep taking it, I might get cancer. This is unacceptable. It is also the reality I live with.

I live with it by quietly enjoying not having cancer. Instead of visualizing the nightmare that might be down the road, I enjoy not having cancer right now. I enjoy not having diabetes complications right now. I’ve learned to pause and think about the things that aren’t happening. Instead of letting potential problems be an invitation to runaway fear, I’ve learned to shift my perspective. A hundred things could be going wrong right now, but they aren’t. I’m glad they’re not, instead of being afraid they will happen someday. Someday things are going to go horribly wrong. That day is not today. Today is a good day.

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Fighting Fear

Part of learning to pace myself is learning to tell the difference between a real problem and an imaginary one. It’s not as obvious as it sounds. The problems chronic illnesses cause have more permutations than a Rubik’s Cube. It is easy to be swept away by fear.

Fear of the unknown has survival benefits. It keeps us from going into a cave that might have a wild animal inside. If you came home and found the lock broken off your front door, you would be afraid a burglar was inside the house. Fear of the unknown keeps us from harm.

Our doctors gave us information about our illnesses. Fact sheets written in plain language explaining what our condition is, and what to expect, are helpful. They also unlock the door to worry and panic. I don’t know about you, but my mind starts trying to solve future health problems in advance. I don’t like surprises. If someone held a surprise party in my honor, I would leave. Yes, I was the child who was terrified of the toy jack-in-the-box. I like to know what is coming so I can plan for it. This makes living with chronic illness hard, because I want to know what to expect, only I can’t. Since I can’t know what to expect, I create contingency plans that have contingency plans.

If problem A happens, I’ll do action B. If action B fails, I will do action C. If action C fails, I will do…

I will do this all night long.

Problem solving in advance can be useful if I’m trying to figure out what to do if my insulin pump malfunctions. Most of the time, it’s not helpful. It’s just spinning in endless circles. Shrinking my perspective has helped me stop spinning around as much. Instead of trying to figure out how to cope with problems that might happen in five years, I’m learning how to focus on problems that might happen today.

Today my insulin pump might run out of insulin. My set might need changing. My pump battery might run out. To deal with these problems, I have insulin in the fridge, sets in the closet, and a spare battery in my purse. I’m ready for those challenges. I have Smarties candy in my purse in case of low blood sugar. As far as diabetes is concerned, those are the problems I am most likely to have today.

Today it is unlikely that I will lose my sight, lose feeling in my feet, lose my hearing, or have any other major diabetes complication. I am ready to deal with the problems that might happen today. I can leave future problems in the future.

Living with chronic illness is a day-to-day challenge for me. I have learned that worrying about what might happen, and trying to solve these problems ahead of time, just makes me crazy. Fear stalks me. Of course it does. The only thing I can do to combat my fear is dealing with today’s problems. I’m learning to acknowledge my fears, but not turn up the volume on them. Fear of the unknown doesn’t deserve my entire attention. Living my life, enjoying my friends and family, this deserves attention. I'm too busy living life today to be afraid of tomorrow.

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My first instinct was laughter

While surfing the crazy part of the internet, I found this place: http://www.qi-light.com/diabetes-treatment-by-qi-light.html

The Qi Light gave me the giggles. Does this look like a reasonable medical treatment?

 

Once I was done laughing, I got angry. The website claims this woo-woo light is a treatment for diabetes. This magic light bulb won't heal diabetes. If used along with test strips and actual medicine, it won't hurt diabetes, either. 

What makes me angry, I mean pissed purple, is the thought that someone will stop using insulin and start using this thing instead. My first instinct was laughter. Now I'm just shaking my head.

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Keeping the pace

Dealing with chronic illness is endless. We deal with medications to treat our illnesses, and medications to counter act the side effects. We go to doctor’s appointments when we would much rather be doing something else. Our illnesses flare up when we want to go on vacation. The only constant in dealing with chronic illness is how unpredictable it is. When I first got sick, I wanted to get better. My only reference point for illness was the flu, where sickness lasts for a few days, weeks at the most, and then life goes back to normal. It took me a while to understand normal evaporated without my consent. I expected to get better, and then got upset when I didn’t. I don’t get upset over progression any more, though. I have learned to expect the unexpected.

I don’t live in bitter resignation, gritting my teeth every day. I also don’t live in false optimism, looking for the silver lining. In that space between bitter and overly optimistic, is a quiet acceptance. I’ve learned that I cannot outrun chronic illness. Rage doesn’t make it go away. Neither does looking for the good in a bad situation. Like it or not, chronic illness is my running partner. What helps me most is regulating my pace.

Five things help me deal with this every day:

1. Make friends with the word No
My parents were active with several social service organizations. When I was growing up, I watched them say yes to every request. Will you write for our newsletter? Will you organize this event? Will you host this seminar? They always said yes. When my mom retired from her job, her social service workload quadrupled. People started saying, since you’re not working, will you be able to… I saw she was unhappy, so I told my mom she could always say no. She looked at me like I had green beans growing out of my ears. The idea of saying no never occurred to her. Perhaps because I watched my mom getting overloaded with requests, I learned the value of no. The word no is my friend. Saying no allows me to focus my limited energy on things that really matter to me.

2. Know your limits
Chronic illness can limit our physical abilities. A five hour hike in the woods might be beyond your abilities. It’s valuable to know this about yourself. Friends and family who remember who you were before chronic illness can try and push you, but you know yourself. The people who love you don’t want you to end up in the hospital because you pushed too hard.

3. Gently test your limits
I know this sounds like a contradiction, but many chronic illnesses flare up and die down. When in an active phase, walking from the living room to the kitchen may be exhausting. It is easy to become afraid of moving when you are physically wiped out and all you did today was take a shower. I have been there. I would still be there if I didn’t learn I could stretch my limits. My rule for limit testing is after three good days in a row, I can try doing something new.

4. Forgive yourself for weak days
Some days are weak days. Chronic illness can make it hard to get out of bed. Sometimes it is hard physically. Other days it is hard emotionally. When you are having a weak day, you have permission to acknowledge it. You have permission to rest.

5. Work to redefine what is normal
What is normal for me now is struggling to maintain my balance, muscle aches, poking myself with needles, taking lots of medication and resting frequently. It took time to make this feel normal. Since my illness is progressive, I have to keep redefining normal as my abilities change. Making room in my life for chronic illness helps me pace myself for the long haul. Life as I knew it ended when I got sick. Life as I have it now is still worth living.

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Wellness is not the same thing as health

I used to dream of a cure. I used to believe this was all temporary and medical science would find a cure. I dreamed of a life without chronic illness and imagined all the things I could do: ride my bike, go swimming, go for a long hike. I don’t do that anymore. I no longer wait for a cure. I want to live my life in peace and joy, with or without a cure. I tell myself this all the time. It's true. All is well inside, and that matters to me.

Even so, a cure would be nice.

When it comes to diabetes, I have reasons for hope. The artificial pancreas blows my mind. A device in my pocket that regulates my blood sugar without constant input, would be amazing. Will be amazing. Thank science for this. It’s giving me the giggles to imagine eating a bowl of cereal and not having blood sugar above 300.

Contrary to popular belief, it’s not sugar that causes high blood glucose, but carbohydrates. I can eat a Reese’s Peanut Butter Cup, bolus for 26 grams of carbs, watch my blood sugar crest at 156 and come back down. A bowl of granola shoots my blood sugar sky high. I want granola. I love the stuff. Crunchy oats, cinnamon and raisins… Oh, I want some. But, it’s not worth the pain. The artificial pancreas will let me eat granola just like everyone else. It’s not available yet, but one day, this device will change my life. Things will be so much better.

Only…

Muscular dystrophy will remain.

Diabetes affects millions. Less than 40,000 people in the entire world have my form of muscular dystrophy. It’s rare. It’s so rare that no one cares. A cure is not coming. Better treatments are not coming. Why invest millions of dollars on a medication to help so few? I hold out no hope for a cure. Instead I put my hope in my ability to deal with it. Because I can deal with it.

 I put my hope in my ability to adapt. I have a wheelchair, a powerchair, a walker, and a cane depending on what sort of day I am having. I know how to deal with weak leg muscles, weak arm muscles, difficulty chewing and swallowing. I know how to live with this. I don’t need it to go away before I can be happy. I don’t need a cure, because I’m already well.

Wellness is not the same thing as health. I don’t have health. I haven’t had health for years. I do have emotional balance, a pragmatic outlook, and the ability to enjoy life the way it is. My secular life makes that possible. I don’t hope for the impossible. Instead I look for hope where it can be found. I put my hope in the love of my family and friends. I put my hope in my love for writing. I find hope in the natural world. I don’t need a cure to have hope, or joy, or peace. I have those things right now. No wonder I am well.

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An Atheist's Hope

How do you find hope without God? That is a question I’ve been asked. I secretly want to turn it around and ask, “How can you find hope with God? Haven’t you read the Bible?” I’ve read the Bible. That’s why I am not a believer.

But, I think the deeper question is, “How do you find hope to deal with chronic illness without falling into despair everyday?” That question is worth a longer answer. I have been living with serious illness for over 15 years. At first, I hoped for rescue. I wanted a cure. I wanted my old life back. The despair was intense and religion made it worse.

 Friends at church prayed for healing that didn’t come. If there was a God who was in control, and chose for unknown reasons to give me an incurable illness on purpose, I couldn’t trust someone who did that. If someone had the power to fix this with a whisper, but chose silence, this isn’t someone I would want to be my friend. I can’t trust a God who can heal but doesn’t, anymore than I could trust a surgeon who could remove a tumor, but chose not to. If a talented surgeon refused to operate and just watched a tumor grow until the patient died in agony, would you trust them? Then why trust God? If God cares, but is powerless to help, then God isn’t all powerful. Why believe in such a being? 

Getting beyond the initial despair was hard. I didn’t know what to expect, or how muscular dystrophy would feel. I didn’t know how to do the things I needed to do to look after myself. A big part of healing for me came from education. I learned about the various stages of my illness and how it would change my body. I learned how other people adapted to weak arm muscles and weak legs. Knowledge gave me strength. Instead of fearing some imaginary unknown, I knew what to expect.

I also gave myself the space and time I needed to grieve. Grief is ongoing when someone has a progressive illness. I get sicker in stages and each time I lose an ability, I grieve the loss. Then I adapt and get used to it, only to lose another ability. Progressive illness is like that. Rage doesn’t change it. Adapting as I need to gives me hope that I can deal with the changes in my life.

Finding hope in heaven doesn’t appeal to me. The idea that I will suffer with incurable illness for 20 or 30 years, die, and then get transported to magical happy land, is silly to me. I don’t want to live forever. I want to live now, on this amazing planet. I want to enjoy the time I have here. I find hope in the changing of the seasons. Every year winter yields to spring and the world around me explodes in color. Life is renewed, and I am alive with it. I find hope in biology. The creatures in a droplet of water astound me. The fact I get to be a part of the natural world gives me hope. One day my atoms will nourish life on this planet. I will become part of the grass and the creatures. Knowing that fact gives me hope. I don’t need eternal happy land. This life is enough for me.

I find hope in relationships. I’m not alone. I’m not the only person who struggles with chronic illness. Lifting others who struggle, lifts me. I’ve got 15 years of experience dealing with this mess. When I was taking chemotherapy and my eyebrows fell out, a fellow cancer survivor taught me how to draw eyebrows. I know how to draw realistic eyebrows. I can pass that knowledge to others. I cannot take away suffering, but I can work to ease it in myself and others. This gives me hope.

I find hope in music and art, in silence and laughter. I find hope in literature, and travel, and learning new things. I find hope in a frog hopping across my path. Life is still interesting! I find hope in curiosity and the freedom to explore. I find hope in a strong moral compass, one based on compassion for the people around me. Doing what is most compassionate, doing what I can to lift others, gives me hope. Giving my hope to you right now, so we can be stronger together, that doesn’t just bring me hope, but inner peace as well.

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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.

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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.

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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?

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Don't Stay Sorry For Yourself

"Don’t feel sorry for yourself." Another phrase people say to shut down my emotions. Is it better to live a lie that makes other people feel more comfortable, at the expense of myself? Of course I feel sorry for myself. My diabetes has been a bitch lately. No matter what I do I have high blood sugars. Low blood sugar can kill me in minutes. High blood sugar is what leads to all the diabetes horror stories. I’m frustrated and angry.

All day long I see people who don’t live like this, people who have no idea what it is like to have their body betray them. I want to trade bodies. I can’t, and that makes me even more frustrated. Sometimes, I feel sorry for myself. Feeling sorry for myself is liberating. When I feel sorry for myself I’m being honest. I’m grieving the loss of my own body. Unlike grieving the death of my mom, there isn’t a moment where I can find resolution. With my mom, I can tell myself, “She’s not suffering anymore.” With my chronic illnesses, it’s not like that. My own suffering goes on.

Of course I feel sorry for myself. When I acknowledge how I feel, I give myself a moment to take the mask off and be real. So many things in life are phony. Feeling sorry for myself makes sense sometimes. When I’m frustrated and unhappy, I allow myself to feel it all. I let it rise into a tantrum when I need to. I let my tears fall. I become my own personal thunderstorm. For a while, anyway. Grief and chronic illness go together. To have a chronic illness is to always be aware of loss.

Telling someone, “Don’t feel sorry for yourself,” doesn’t help. It just shuts down the freedom to be real. Being real is more valuable to me than a fake smile. I did enough pretending when I was a Christianus Sickus, pretending to be beatified by my illness. Now I get to admit that it sucks sometimes, because it does suck sometimes.

Instead of telling myself, “Don’t feel sorry for yourself,” I say, “Don’t stay sorry for yourself.” Wallow for a while. An hour. A day. A month. Even a year if necessary. As long as it takes to let the pain out. Then I can stand back up inside. Self pity is a place I visit, not a place I stay. I don’t want to live in a permanent thunderstorm, raining down pain on myself. I need to build shelters in the rain, because the rain isn’t going anywhere. This blog is my shelter in the rain. If you need a shelter, you’re welcome to join me here.

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Positivity is not a cure

“Keep a positive attitude.” It’s one of those phrases people say to shut down my emotions. A positive attitude is easier on other people. It makes chronic illness seem less scary, and less difficult. Everyone is familiar with acute illness, an earache, flu, or a cold that slaps them down for a bit, but then they recover. Chronic illness isn’t like that and it is hard for people who don’t have one to understand what it is like.

A positive attitude will carry you through a stomach virus, or even help you recover from surgery. But, when there is no recovery, the advice just hurts. The only way I can keep a positive attitude is by pretending that this doesn’t bother me. Truth is, this does bother me. Some days it bothers me a lot more than I let on. A positive attitude doesn’t change my reality. My reality is brutal, like January in Minneapolis. Acknowledging the brutality of chronic illness doesn’t mean I am giving up. It just means I know I am fighting a battle I cannot win. I am free to lament. Free to grieve my losses. It is spring right now and all around me people are riding bicycles. I see them going up and down the street. I live between a park and a bike path. I remember riding a bike. I remember how it felt to push the pedals, to glide down hills with the wind in my hair. I remember riding my bike. I loved my bike. Now it is gone and I am still here. I am here watching people do what I can’t. On this warm spring day I am free to recognize that I feel left out. I am free to feel tears in my eyes. I am free to grieve the loss.

A positive attitude is not a cure. Painting a happy smile and a rainbow over my head doesn’t change the feeling of loss. It just adds guilt to the sadness, because I don’t feel like smiling through the pain. Instead of keeping a positive attitude, and  pretending that everything is wonderful, when it isn’t, I’ve learned to work on balancing my perspective. No, I didn’t sign up for all this. If I had to choose the one person on earth least likely to handle chronic illness well, it would be me. But, I am here. I am alive. I am outside looking at a garden full of flowers. I planted those flowers 15 years ago, three months after cancer surgery. The flowers greet me each spring, reminding me where I’ve been and how hard I fought to get to this place.

The flowers remind me to balance my perspective. I cannot fix what is wrong. I can acknowledge its impact openly and honestly. Then I can lift myself up again. The garden is beautiful. There is still beauty in this world. The beauty doesn’t always out weigh the ugliness, but I’m learning to pause to look for beauty nonetheless.

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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.

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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.

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