Saturday, September 12, 2015

What’s it like to have asthma?

Breathing through a straw may simulate shortness of breath,
but it will not reveal what it's like to have asthma.
So what’s it like to have asthma, anyway? I have never had anyone ask me that question. At the same time, however, I have tried to explain it to family members and friends, and it never seems to do any good. So what’s it like to have asthma?

I am 45 years old, and I grew up with it. I never felt sorry for myself, mainly because I never had a chance to live without it. To me, normal is living with it. Normal is seeking options to live well with it. Normal is making sacrifices to be a gallant asthmatic, sacrifices people with normal lungs never have to make. I simply learned to deal with it.

What I find interesting is not so much how I deal with it, but how others deal with it. How do non asthmatics react, or not react, to people with asthma? How do non-asthmatics perceive asthma? That, to me, is the more interesting aspect of asthma.

My close friends know I have it, but they don’t know what it’s like. I know this because I live with it and they don’t. You can breathe through a straw, but that’s not the same. You can’t manufacture what it’s like to live with asthma. You can live with someone with asthma your whole life, even witness that person suffer, but that’s not the same either. So, if you don’t have it, you can’t understand what it’s like to have asthma.

Think of it this way: when I’m feeling asthma symptoms, you can’t see it. So you have no idea. I mean, if I broke my leg, you’d see I’m limping; you’d see the cast. But you can’t see asthma. For this reason, you cannot grasp the concept. In fact, this is one of the five reasons why there is still no cure for asthma even though it was described in ancient Greece.

There are some people close to me I have explained what it’s like to have asthma hundreds of times, but they don’t have it so they can’t grasp the concept. They might understand for a while, but then they forget. Here, let me give you one example.

As kids, my brothers built forts in the basement using blankets. They pressured me to join in on the fun, so I caved and started crawling among the dustmites. It didn’t take long for my asthma to strike, and I was forced to quit. My brothers were initially upset, but understood once I explained how I felt.

The next day they again build a fort and expect me to play with them. I decide to watch TV instead. They are frustrated with me, and I again cave. The asthma strikes just like last time, and I quit. I explain why I quit, and they understand. Once I’m feeling better they want me to play some more. You see, because they don’t have it they don’t learn. They can’t grasp the concept.

This is not a criticism, it’s an observation as an asthmatic. It’s human nature for my brothers to react the way they did.

Many times when I was a kid my dad would have us boys help haul wood. When I did it the asthma would strike. Sometimes my dad would even take me to the emergency room. My dad saw what it’s like, and he’d understand.  A week later he'd expect me to join my brothers in helping haul wood.  You see, he doesn't have it, so he forgets.

One year my dad took me to hunting camp and I have an asthma attack.  So he leaves the fun to drive me all the way home.  The next year he talked as though I was going back to camp.  You see, he doesn't have it, so he forgets.  Because I want to be around my dad, to be one of the guys, I cave and go. I mean, I want to be normal too.

Sometimes I do fine at camp, but occasionally I have to go home.  I explain why I'm leaving. My dad and brothers understand.  But then they expect me to come back.  You see, they don't have it so they forget. They expect me to be one of the guys, something I want too.

But since I live with it, I am the one who has to prepare my lungs for it, and I"m the one taking the risk, not them.

But they don't see that.  What they see is me there being one of the guys.  If my asthma acts up they don't feel it, they don't see it. So they don't know if I don't tell them. If I don't explain what it's like, they don't know.

To go a step further, sometimes I'm feeling short of breath and have to take it easy. So, I spend the day on the couch writing, or watching TV -- but probably writing, because that's what I do. My wife might think I'm being lazy, because there's work to do around the house. You see, she knows I have asthma, she's seen it, but she doesn't have it, so she forgets. Again, this is not a criticism, just an observation.

And that's why, when I'm having trouble, I say, "I'm having an asthma attack," or "I can't breathe today."  I have to do that.  If I don't say it, they won't know.

And, further, I sometimes get the feeling that the people I tell this to, the people of whom I share how I feel, think I'm making excuses to get out of doing something.  Sometimes they say this to me.

And sometimes it's the opposite, where I don't want to explain how I feel. This is probably more likely. If you are not my wife, or if you are not my dad, I probably won't tell you how I feel. And, in this case, I'll let the chips fall where they may, and you can think, or assume, whatever you want and I don't care

Sometimes they say it by their actions. Sometimes my brothers would tease me for sitting on the couch instead of playing football when wood smoke was polluting the air.  One of my brothers once said, "What a useless peace of skin you are."

This is not a criticism, it's an observation as an asthmatic. It’s human nature for dad’s to want their kids to help with chores and not to make excuses. It's human nature to want your brother to join in on the fun. However, there are side affects to actions.

When I felt I was being a bother, I'd keep how I felt to myself.  Even when I knew I shouldn't, I would go with dad to hunting camp, or I would haul wood, or I would play football in the smoke filled air.  And, more often than not, I would suffer the consequences thereof.

Now I make it clear to those around me that I'm having trouble with my asthma.  Because they cannot see it, I feel I must tell someone just in case.  I do not do it for empathy, which is good because a rarely receive empathy.

I think it's natural for people who don't have asthma to think everyone else is normal too.  And I think it's safe to say, that most people with asthma yearn to be normal.  I know I do.

This might explain why I continue to go to hunting camp even though I’ve had many asthma attacks there, and why my dad and brothers just assume I will attend, even though they should know what might happen. But they don’t, because they forget, because they don’t have it.

I go because I want to be normal, and they expect me to be there because they forget. This happens because I have it and they don’t. They cannot grasp the concept. Unlike a broken leg, they cannot visualize asthma. So they cannot fathom what it is like, even when I explain it.

This might explain why I continue to go into my basement and clean, even though I know this will result in an asthma attack.  It's that quest to be normal, even though I'm not normal, at least as far as my lungs are concerned.

You see, asthma is more than just being short of breath. This is because asthma is about preventing yourself from becoming short of breath.  It's about avoiding asthma triggers. It's about not going into someones home if they smoke, or have cats, or dogs, or mold in their basement.  It's about taking medicine every day of your life.  It's about planning ahead when you leave the home to make sure you have what you need handy in case you need it to get your breath back.  

You see, asthma is more than just being short of breath.  It's living with the risk that you might get short of breath.  It's also living with the desire to be normal, and knowing others think you are when, in actuality, you are not.  It's about trying to get people to understand what it's like, even though you know they cannot conceive of what it's like, because they don't have it.

Now you know what it’s like to have asthma, sort of. It’s more than just learning to deal with asthma attacks, it’s seeking options to live better with it, and it’s learning how to prevent attacks. It’s learning to deal with how others react, or don’t react, to it.

So, what’s it like to have asthma? 

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