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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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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