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.


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.


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.


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

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.”
“How can I do your will?”
“What do you want from me?”

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.


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.


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

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?


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.


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.


  © Blogger template Shush by Ourblogtemplates.com 2009

Back to TOP