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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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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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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