It’s a real pleasure to have my good friend and asthma advocacy partner Kerri MacKay here as my first guest poster. Thank you Kerri!
For as long as I can remember, defining moments in my life have had some sort of musical connection to them. To use two very cool album titles in the same sentence, it’s been about words & sounds (Eric Nicholas), and scars & stories (The Fray) defining various characteristics of and nicely summating my story: I live with a soundtrack–whether it’s the philosophical reflections about a lyric that fits in my life so perfectly within the chapter being written; when my fingertips are all torn up from spending some time with the guitar; or those moments when I’m walking down the street and the perfect song for how I’m feeling in that moment shuffles onto my iPod.
With a skateboard and my shit guitar / I dream all day that they would get me far […] if I had a chance for another try / I wouldn’t change a thing / it’s made me all who I am inside. […] And every day I wake, I tell myself another harmless lie . . . the whole wide world is mine.
Rite of Spring, Angels and Airwaves
Music, like life, is up for interpretation. The person who wrote it may have been going through a completely different experience, but whether it’s a slightly tumultuous piano riff that crescendos into the best part of the song (a la Caves by Jack’s Mannequin), a punchy bass line, a victorious guitar riff or just the right vocal inflection accompanying a set of lyrics that just about makes you freeze . . . Yet, at that moment, days, months, years after it was experienced and then written by the composer . . . you’re stopped dead in your tracks like it was written about you. With a choice whether to move forward with that feeling of epiphany–or to abandon the experience and abandon the moment and continue your life unchanged, without a new sense of understanding of yourself or the world around you. That choice is yours alone.
The same choice comes with the diagnosis of a chronic disease–let it teach you, let it challenge you, let it help you grow . . . or choose to abandon the experience.
There’s a lot that I don’t know / There’s a lot that I’m still learning / When I think I’m letting go / I find my body is still burning / And you hold me down / And you got me living in the past . . .
The Resolution, Jack’s Mannequin
The danger of abandoning the experience is threefold. Physically, untreated, any chronic disease will take a toll on your body and your emotions–no matter how hard you try to deflect reality. Alternately, there is the ability to get stuck in limbo: a place where you simply idle, you do not change, and you do not affect your experience by modifying your perspective–you go through the motions to keep yourself healthy physically, but abandon any emotional connection, not allowing yourself to truly process what you’re feeling. The third is that, without treatment, it is not a case of if things will get worse, but when–and what repercussions this will have on not only you, but also those around you. There is a fine line between keeping healthy distance for purposes of, you know, sanity . . . and ignoring reality. This, and our behaviour in regard to asthma . . . is a choice.
Hey midnight, turn on your lights. / Roll out your stars . . . / I look tired, but I feel wired and my body hums like it’s coming undone . . .
Odette, Matthew Good
There is entirely a place for negativity—for frustration, for anger, to feel that dealing with a chronic disease is unfair. The flip side is not allowing your mind to get stuck there, and channeling those feelings into Good Things and growth. This is where choice comes in: to own your disease through how you interact with your body, to question, to make the active choice to not follow all the rules.
Change starts in your mind / Leave the past behind / Forget everything you know / Make a change . . . let go.
And this is where we enter a word that I invented that will probably never make it into even the most liberal of dictionaries. It’s not a diagnosis—it’s a lifestyle. For people with asthma . . . who are badasses—perception changing, world-altering badasses—and therefore do awesome shit.
Circumstance does not come with a choice—I don’t have a choice to have asthma. How I reacted to it, felt about it, thought about it—once I realized I completely have the ability to change my own thoughts—was 100% a choice. I can’t change my circumstances—I can change how I respond to them (thank you Jay Greenfeld for that piece of wisdom!). I have a choice to make good choices, and to not only feel as good as possible, but do as much good as possible in spite of it all. That good starts in myself and with myself, hopefully leading through example to encourage a ripple effect—of other people making positive changes and feeling that difference both physically and emotionally.
I’m keeping an eye on the future / An eye on the past / And the present in my pocket, just in case I need a door / […] The ripple effect is too good not to mention / if you’re not affected, you’re not paying attention. / It’s too good, not to have an effect.
“Your body can only give you what you give it,” is likely one of the most perception-shaking quotes I have heard in relation to health—and I was fortunate to hear it shortly after my asthma diagnosis when I was seventeen. Incredibly simple, but intense enough to light a fire under the perception of what it means in that health is simply not a passive experience—and certainly not so when you are balancing everything that comes with all the “strings attached” to being diagnosed with a chronic disease—but a choice in spite of circumstance.
It’s a new dawn, it’s a new day, it’s a new life . . . for me. And i’m feelin’ good.
Feelin’ Good, Muse
I think part of being a badass[matic] is making a lot of mistakes. Mistakes are awesome pending you climb over them and end up in the right place having learned something. Prior to almost the point of my eighteenth birthday, I could seriously care less what I did regarding my health. I think I was more pissed off than I realized about the asthma thing, and that in itself wasn’t healthy—but not only that, it was that I didn’t make the choices that helped things get any better. Then, something clicked (thank you Epic Steve). I joined a dance class for five months to close off my high-school career, and I realized that exercise didn’t have to be all sports and gym and suck-fest. And I was kind of blown away. At this point, my asthma “control” was nearly nonexistent, but I got up there nearly every morning and tried. I realized that physical activity could be far more than a thing I was ‘supposed’ to do, and be a thing I wanted to do—with the benefit of getting healthier and actually understanding my own body more (seriously, it’s amazing how disconnected your brain can actually be even though you’ve spent your entire life attached to your body). I then morphed into an occasional gym-goer, but more frequently I just dance in my living room when nobody’s home. [Side note: I turned into a mildly-regularly-exercising kinesiology major in the last almost five years since my asthma diagnosis, and the level of “what the actual eff?” in my head is still sometimes so high.]
You should make amends with you / and if only for better health. / But if you really want to live / why not try and make yourself?
Make Yourself, Incubus
Being a badassmatic? It’s beyond a treatment protocol. It’s beyond the inhalers and neb treatments (I’m known for giving nebs The Finger. Yes, that one.), beyond the doctor’s visits and PFT numbers and the stuff you have to do to stay healthy. It’s so far beyond the disease itself and into the realm of choice. It’s a lifestyle.
It’s understanding your disease and what’s going on in your body–choosing how you interact with your body. It’s understanding how you’re feeling about that, and how you can modify that perception to allow you to deal with your asthma effectively—in every way possible. It’s knowing that by putting good things into your body that you’ll get more good out—knowing the effects of nutrition on your immune system, your energy levels, and the growth healing process we’re putting our bodies through simply by existing every day.
It’s knowing yourself and what you want. It’s asking questions, it’s forming an understanding, and sometimes . . . it’s about questioning the choices someone else is making about the thing that you have to live with every day—asthma—and learning what more can be done to make your life better, and making an active choice to create change in your life.
It’s allowing nothing to stand in your way of what you want to accomplish. In reality, asthma is nothing but a six-letter word—letters are arbitrary. Perception is flexible. Make what you want out of those six letters and perhaps let them help explain you . . . but do not let them define you. They’re only as big as you let them be. Choice is as big as you let it be. Life is as big as you let it be.
Badassery? Badassery is as big as you let it be, too.
Like music, it’s about how you choose to interpret it—not about how somebody else thinks you should see life. I see life alive in every way . . . because a badassmatic allows nothing to hold them back.
I will make little paraphrase of popular watchword in Eastern Europe during communist times: “Asthmatics of all world – unite!”. You are from USA, Kerri is from Canada (Am I right?), and me from Poland, Europe. That’s really nice 🙂
Last time I counted, that I live with that disease half of my life. Or more. It is life like in Indian movie – sometimes rain, sometimes sun.
No, I’m not in Google+, according to my last comment.
Thanks for the comment. I think the importance of unification of people living with and doing Good Things with asthma around the world can’t be understated. If we’re ever going to change anything . . . we have to be in this together and ready to–to jump on the words of Norman Vincent Peale–“change your thoughts, and you change your world.” There’s good and bad in everything–and I’m happy to hear you are able to see the good–or . . . the sun! :] Beautifully written.
Steve — Thanks again for sharing! :]
And do You know, that the Polish doctors have their impact in asthma treatment and diagnosis? One of them made probably one of the first modern spirometer: http://www.alergia.org.pl/pacjent/objawy/spirometria.htm – photo from the 60’s.
I’m not activist – only simple woman, who want to give testimony of life with God and… Asthma. In my country there is a lot of stereotypes and superstitions about this disease among common people.
Greetings to You, Kerri and Stephen! 🙂
Telling your story is a huge piece of advocacy–keep it up! :]
Zim Im curious, what are some of the superstitions regarding asthma in your country?
The most popular wrong opinion in Poland is that, that asthma is disease of soul – so if You don’t think about it, it will disappear. Some people here think, that it is Your fault, that You have that. It is terrible stereotype, that we are freaks. I personally knew people, who thought, that I’m hipochondriac.
The another one is opinion, that it is disease of old people. Some people are really surprised, if someone in age of 20-30 or teenager has asthma.
The next is opinion, that You absolutely shouldn’t take medicines against that, because it is poison for body and if You feel good, You should stop taking them.
But the worst thing is discrimination in access to job. If You have asthma and You tell about it, in Poland You must be ready for fact, that You can’t dream about job, because in opinion of most employers, if You have asthma, You can’t work well. But this kind of discrimination is common not only for people with asthma, but also for all people with chronic disease and disabled. In big cities like mine this problem is relatively small, but it is real problem in small towns and villages.
The only chance to change that is education. If You are Polish asthmatic and You graduated college, You have bigger chance to get job. Good job for You.
Wow. I’ve heard it was kind of like that back in the day, but didn’t realize there were still places in the world where that was the case. Here in Israel we have public service announcements on the radio and media reminding people to get theirs and their children’s asthma under control. I think it’s pretty widely understood that it’s a problem with one’s lungs and not with their brains. And there is an asthma charity here that does advocacy and such, but it’s nothing compared with other countries, probably because we’re such a tiny country and people have other issues on their minds, but I think it can and should get bigger.
Then again there are people who for some reason or another are still stuck in their misinformation. For a while during my psychology degree I was working as a mentor in a program for young women with various mental illnesses. I had a huge scare when I was out and about with one of my patients (one of a variety of different types of scares with this particular patient) and she had an asthma attack and started flipping out because she was new to asthma and had no idea what to do. She had no inhaler on her so I called her mother to ask if I could give her mine (hugely unprofessional, but what was I supposed to do?) and was lucky enough that my being asthmatic (and a responsible one at that) was able to save the situation. When I was telling my boss, a social worker, about this and I was really worried about this girl because her asthma wasn’t under control at all, and no one thought it was important to teach her how to properly use an inhaler or carry one around with her. My boss, who I up until that point loved and respected like no other, rolled her eyes and said something along the lines of “Really? Asthma too? Not just schizophrenia anymore?” I told her sharply that asthma is a physical illness, not a psychological one and that I, who she adored and valued as an employee, have been asthmatic for most of my life. That shut her up. But seriously. Gah.
I remember that in the 90’s, when I was child, asthma was some kind of taboo-disease. It wasn’t topic for discussion with doctor.
Today more and more doctors know, how to recognize that. But I remember, that before some smart doctor told me about asthma, everyone had been talking, that I have “regular infections of lungs”. Today, in the 21st century, knowledge is larger, but still a lot of Polish children is “diagnosing” like me in the past.
Fortunately, I have really good doctors, who knows this disease very well – and they don’t say anymore these stereotypes. But I know, that not everyone in my coutry has this happiness…
Sorry, if my English isn’t perfect 🙂
Wow, those are crazy superstitions. It was the same here in the US during the 1960s when I was growing up. They used to call it a ” psychosomatic” illness. Now that asthma has become a worldwide epidemic ( 20 million asthmatics in the US alone), people are becoming a little wiser, but we have a long way to go.
Zim, please sign up for Google + ( if it’s available in Poland) and join us. Im sure you can teach us a lot.
Would love to have you in the group, Zim!
Once again, all comes down to perception and education, I suppose.
I hope that since this is a lesser problem in bigger cities, that soon the correct realizations and knowledge about asthma filter out into smaller communities, too.
Yes, it is available in Poland, but I’m not severe asthmatic – only moderate. Last time one of my doctors started to suspect in me aspirin-induced asthma, but I must ask him about more.
I’m also not in the severe category–you should come check it out :].