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|November 20, 2014
This is Not a StoneBreathe In
by Hannah Bird
My daughter sighs in annoyance. “Show off” I say. She laughs. She laughs every time. She is waiting for me to catch my breath so that I can finish what I was saying. I have been waiting to catch my breath for a lot of years.
Sometimes, I am fine. Kind of. But sometimes breathing is so hard for me that I cannot bear to do it and anything else. For a long time I thought that doctors would find a thing to be fixed. For an even longer time I thought I was just weak. For the very longest time I thought that the pain just was like Mondays and zits — inevitable.
One day, I stood in a medical supply office with a sheaf of papers from my new pulmonologist. The clerk cheerfully handed me a little gold ribbon pin to wear. It, he explained, represented COPD and people like me. I was 41.
I explained that he must be mistaken. COPD was something that old people have and they die. He smiled gently and shuffled the stack of papers that ordered a breathing vest for me that cost more than my brand new car. "Oh," I said. But I never wore the pin.
So sometimes I am kind of fine. I wear a vest that shakes obstructions loose. This is a little tricky because I have chronic inflammation in my sternum. It can really hurt. I take medicine. I laugh that I have inhaled one hundred dollars before lunch.
I cry sometimes because on bad days it feels too true. I use a nebulizer. I must sleep under a cloud of wires and tubes and alarms. All it takes is all these things all day each day and I am fine. Unless you sneeze on me.
I stay home during flu season. I don’t go to church. Three hundred people in a room passing a tray from hand to hand is the perfect delivery system for sniffles that I cannot get. I used to try. But my last infection lasted six months and ended with a me acquiring a super bug.
I don’t know what was supposed to be so super about it. I didn’t care for it personally. I realized I was traumatizing my kids. I decided they needed me well more than people needed to see me at church.
This is not the most fun I have ever had. It is not what I thought my life would look like. But this is my life and it is still a good one. I am so incredibly fortunate. My husband has the rare ability to act surprised and concerned every time I don’t feel well. He does not get frustrated. My kids are amazing. This could be so much worse.
But it could also be better, for me and everyone who struggle with chronic illness. People mean to be kind. There is just a gap between what they mean to do and what it is to live with chronic illness.
I have a friend that has a crippling pain disorder. He has a very kind acquaintance that knows this and always greets him with a concerned hug and squeeze of the arm. He sees the kindness and wants to accept it. So he takes the hug and squeeze. The pain will stay with him for days.
Almost everyone I know who has a chronic medical issue has had the experience of someone suggesting or inferring that they are making it up entirely or at very best making too much out of it.
Having a doctor sit down with my x-rays and show me all the missing bits of my lungs was the sweetest relief. I am not (just) whiney and crazy. But still there are days when I wish I could wear those x-rays on my shirt. If I had a missing leg people would believe that, but lungs they cannot see and are less willing to take my word for.
So perhaps, if it isn’t too much trouble maybe you could never ever do any of these things again.
Don’t tell me to be positive. I am. I am positive that you are being a jerk. I am also positive that in the late night when I cough that first cough with burning pain, I will be positive when I cough blood into the sink. I will be positive that whole night.
I will be positive as I call my doctor. More positivity while I sit in the vest, on the nebulizer. I will joke with the nurse who gives me shots even though the one in my sternum hurts like the fire of a thousand suns.
I will be positive while I try to re-arrange life. But not one bit of that positivity changes that I hurt. I am scared. I am tired. I spend all our money on that not-fun kind of drugs. And as grateful as I am for my life, every now and then I feel like I have had enough.
Don’t tell me how strong I am. It’s not a compliment. There is not a super race of people that are so strong and wonderful that we hurt and suffer for fun. I have learned a great deal from being broken. But be clear on this — I would give that all up in a heartbeat. If I had a choice and picked this, that would be strength. Trying to survive is me being human.
Which reminds me, I don’t want to hear your theory that I picked this in the pre-existence. I don’t care how very strongly you believe that I marched my ethereal self over to the “No Breathing” line. You don’t know that. And it dismisses the struggle that people go through.
If you insist on telling me this theory, you cannot complain when I “remember” that in the Pre-existence you asked me to yell at you until you cry and then give you the beating of a lifetime.
Also, don’t tell me that everything happens for a reason. It does. The reason I am sick is simple: this is a fallen world. And one day when I was a very young child I caught an illness that wrecked my lungs.
Good things can come out of it. Good things have. The Lord can redeem my suffering and pain. That is different than him causing it or wanting it. This isn’t Eden. This world comes with dangers and pain.
Please do not freak out when I am symptomatic. It’s not fun to spend energy trying to make people feel better about my illness. I am sick. Make yourself ok. Every person I know that struggles with chronic illness fights this. If you think someone with an illness is handling it a little too well, it may be because you are not.
Everyone cannot freak out at the same time. That’s exhausting. If you want to know how I am or what I am experiencing then you need to be able to handle that.
Don’t tell me I look like I am doing fine. The only exception is if you have x-ray vision and can actually see if I am fine. I understand the miracle of a little blush and lip gloss. It is how I try to pass as a normal person. It is because I do not want to discuss whether or not I am fine.
No. Your friend did not have this and cure it with garlic/oils/rock licking/or nude dancing beneath the silvery moon. It is one of the greatest frustrations of chronic illness that people keep expecting it to be over. They expect you to get better. I do get better. And worse. That’s what chronic means. It means this is my special buddy/nemesis from here on in.
When I still have this special buddy next year, I don’t want to hear that I should be doing more to get rid of it. Unless you are a medical specialist and understand the nature of my disorder, I don’t want to hear what I should be doing.
There is a dirty little secret in our culture. We believe that health is our right and default setting. We believe that health is the natural consequence of good choices. There is some truth to that but it is limited. And not seeing those limits leads to blaming sick people for being sick. That’s just rude.
There is another dirty little secret. We believe that health is very important As the Six Fingered Man once remarked to Prince Humperdinck, “If you haven’t got your health, you haven’t got Anything.” Of course he is the villain of the piece. Perhaps we ought not agree with him.
Would I love a time machine and the pneumonia vaccine that would have protected my toddler self? Probably. But it isn’t everything there is to being me. I am not my lungs. You are not your body either.
Just thought you might want to know.
|Copyright © 2024 by Hannah Bird
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