elisheva’s asthma story: reflections and musings on asthma and world asthma day

My friend Elisheva is now on her third guest post on blogs I’ve written in the past, and her second here on Kerri on the Prairies!  Elisheva and I connected several years ago because of our asthma, and I think she is my furthest-distance long distance friend, living in Jerusalem, Israel.  Aside from being able to talk about our asthma, I love how much I learn about not only Israel, but the rest of the world from knowing her, as well as simply seeing how she has progressed through a variety of different life stages in the three-and-a-half (or more?) years since we’ve known one another!  And a fun fact . . . Elisheva is also known for hosting World Asthma Day (WAD) parties, something I think is extremely cool–thanks for guest posting again, Elisheva!

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Kerri asked me to do a WAD themed guest post.  And I love Kerri’s blog, so how could I say no?

I first heard of WAD… uh… maybe 6-7 years ago from a friend who loves checking what  special day each day is – cuz every day is something if you check.  Said friend is asthmatic too (tho since she’s been an adult, it’s become much more mild and she only needs the occasional Ventolin – lucky!  Although she also has deathly food allergies – not so lucky.), so we organized a party.  And since then, every year we’ve had a party.  This friend had a baby a couple of months ago and I’ve been busy with my own stuff (I just got back from a week in the Czech Republic – Fun!), so I think this year won’t be that exciting – tho there will definitely be some sort of party!  You can read about the one from 2011here (from back when I blogged).  Was pretty rockin’.
 
So… WAD.  I love WAD.  I love this time of year because the weather is generally nice and there are a whole slew of Jewish and Israeli holidays that are my favorites and also there’s Eurovision and Britain’s Got Talent.  (I’m easy to please.)  But WAD is great because on that day, asthma isn’t something that makes me weird and different – it’s something that makes me special.  And while it’s supposed to be about awareness, I just celebrate it.  Get together with friends who have also been on inhalers their whole lives or most of their lives or only recently or not at all and eat food and play games.  I love food.  And games.  I still have to come up with one by Tuesday.  Hm…
 
I actually have a lot of asthmatics in my life.  I tend to attract them for some reason.  And I come from a family of crappy lung gened people.  My mom, my brothers, my aunt and several of my cousins are asthmatic too.  In terms of living with it and in terms of WAD, it’s all about how you look at it, I think.  I keep inviting my brothers to WAD.  Every year.  One (asthmatic since age 16 or so) lives in the US now, so he can’t come, but he likes the idea.  The other (asthmatic since birth) thinks it’s lame and that I’m weird and keeps asking me why he should celebrate his lung disease.  I tell him (and anyone else who asks) that’s it’s not celebrating the disease itself.  First off, I love parties.  Any opportunity for a party is great.  I also love WAD because it’s turning something negative about me and making it almost positive.  Hanging out with other people who know what it’s like and share my experiences and who can make fun of it with me.  And eat food.  And play games.  Yay WAD!
 
Kerri marked her fifth asthmaversary last week.  I have no clue when mine is — just that it was at some point during fifth or sixth grade.  In Jewish culture, all trees have the same birthday – 15 Shvat.  Doesn’t matter when in the year you planted your tree.  On that date, all trees become a year older.  I hear in some cultures it’s like that for people too.  So I figure WAD is as good a time as any to be a collective asthmaversary for people who have no clue when theirs is, eh?  And on my fake/alternative/replacement/tiny-chance-that-it’s-actually-real asthmaversary, I’m gonna get all reflective.  Cuz that’s what birthdays and anniversaries, etc are supposed to be for, right?  Reflecting.
 
I’ve always wondered how life would be if various factors were different.  What if I was born male?  What if I lived a hundred years ago?  What if I wasn’t Jewish/Israeli? (That’s a pretty open one.  Cuz then, what would I be instead?  There are a billion alternatives.)  For many of those I conclude that I just wouldn’t be me in those situations.  My identity is built so strongly into those details of my life that if they changed, my experiences and beliefs and outlook on the world would be so different, I just wouldn’t be me.  What if I wasn’t asthmatic?  Then provided the rest of my life was the same and that was the only difference, I’d definitely still be me.  In this alternate reality, no one in my family would be asthmatic (since I’d already seen plenty of asthma before my own diagnosis) and we wouldn’t have any other chronic thing instead.
 
Okay, let’s run with this.  If I wasn’t asthmatic:
 
  1. I’d likely smoke hookah/nargila socially. I drink socially.  And in the Middle East, drinking socially generally goes with sharing a hookah.  I personally love the smell of hookah and honestly believe that smoking one a few times a year really is fine – if you have healthy lungs.  I believe that cigarettes are disgusting.  But so is drinking all the time.  Every time I get a whiff of nargila, I tell whoever I’m with that if I wasn’t asthmatic, I’d definitely smoke one.  Then again, this is all theoretical being as I was diagnosed as asthmatic years before I was ever offered a smoke.
  2. I’d probably be more of a bum in terms of physical fitness. I exercise 1-3 times a week when many of my friends don’t exercise at all.  I occasionally use asthma as an excuse to get people to join me (“I have an incurable lung disease and pump drugs into my body to breathe normally and more to exercise.  And I still do _____.”)  But most of my friends have either brushed me off as crazy or tell me I do it BECAUSE of the incurable lung disease.  Because I feel the need to prove myself.  I think there’s some truth in that second group of people.
  3. I’d be less compassionate and understanding than I am now. That’s something my friends really like about me and tell me pretty often.  I have several friends who have more severe/debilitating/life altering diseases than I do, and I adapt to their needs and treat them as normal without thinking twice.  As healthy as I am – and I am lucky and am able to have my health under control and feel pretty normal a lot of the time – I do know what it’s like when walking down the hall to the bathroom feels like running a marathon.  And even on a day-to-day basis when I’m feeling fine, I know what it’s like to monitor your health and take meds when your friends don’t.  (I’d say I don’t take breathing and good health for granted, but I mostly do.  I’m spoiled by modern medicine.  Which is why whenever my breathing craps up for days or weeks and actually disables me in any way, I turn into a huge baby and feel sorry for myself, because I’m used to doing the treatments and actually having them work and feel betrayed.  But whatever.  I know what it’s like to not have your body do what you want it to do.  It sucks.)
  4. I probably wouldn’t have a primary care doctor. I hate going to the doctor so freaking much — It’s not normal.  So much that when I was a kid I had high blood pressure every time I got it checked and the doctor eventually sent me to have my heart checked out – it was fine.  Turns out I have perfect blood pressure and it only goes up around doctors.  Having lung issues for most of my life has made it necessary that I see a doctor occasionally – to keep tabs on my breathing and to make sure I have a steady stream of prescriptions coming my way, but I STILL can’t stand going.  Every time I have an appointment, I spend the entire 24 hours beforehand dreading it.  If I didn’t have something I need to keep going back for, I’d probably never go, and when I did, it would be to whoever happened to be there and could see me that day.  Which is what a lot of my “healthy” friends do.  Lung specialist?  Hah.  I hate that even more.  I only end up there every few years when my GP nags me that it’s been a while and I should really get pulmonary function testing done.
  5. I could probably run/swim/do any and all physical activity much better than I can now. Provided I worked at it as much as I do now.  I’ve given up believing I can run and swim like everyone else.  Zumba yes, but running and swimming are just too hard for me and will always continue to be hard.  I still do them, but I don’t think any amount of any asthma drug can get me on par with everyone else.  Perhaps if the water wasn’t chlorinated or if running had breaks…
  6. I could freaking clean my house properly without coughing and without extra drugs. Then again, I could do anything and everything without any inhalers at all.  Ever.  I can’t even imagine that.
  7. Also I wonder what long term effects asthma and its treatment have had on my body. As far as I know, I don’t have any permanent lung damage.  I wonder if my body would be any different if it didn’t have ~16 years of asthma drugs pumped into it.  A friend of mine is a massage therapist and last week she was working on me and pointed out that in most people (i.e. anyone she’s ever worked on before), she couldn’t feel their accessory breathing muscles in their neck – which are really only used when someone is struggling to breathe.  In me, they were totally buff.  So I guess I wouldn’t have those.
  8. I wouldn’t celebrate WAD and I wouldn’t be writing this. I wouldn’t know Kerri or anyone else I have met and become friends with because of having this in common with them.
I dunno.  I don’t think my life would be that hugely different.  As far as I’m concerned I lead a pretty normal life.  The things on this list aren’t that huge in the grand scheme of things, yet they define a significant part of who I am.  Being asthmatic, doing the right drugs at the right times, taking the precautions, going through the motions are so ingrained in me that I take them for granted.  Hence when people feel sorry for me, I can’t stand it, cuz my life doesn’t suck.  But if there was a cure in my lifetime, it would take some getting used to.  (Though wayyyy easier to get used to than if I woke up male or Mexican or in the 19th century…)   I mean it would be awesome.  But life with no inhalers?  No getting out of breath or coughing ever?  Hah, what?
Have a happy and healthy WAD, everyone 🙂

 

4 thoughts on “elisheva’s asthma story: reflections and musings on asthma and world asthma day

  1. Thank You for sharing. I life with that half (or more) my life. I didn’t know about these little things in Your life in Jerusalem. I read a lot about this city and my dream is travel to it… Actually I’m in Bosnia, in next week I come back to Poland.
    And I didn’t know, that ALL May is Asthma Awareness Month! I knew about Day, not month.

    1. Thanks Zim! Yeah I’ve also had asthma for more than half of my life. Israel’s not that far from Poland (probably about a 3.5 hour flight). I was in the Czech Republic last week and the airfare was very decent.

  2. Today is World Asthma Day… But what’s a pity that people remember about us only one day in year. And in normal life is a lot of problems…
    Poland is first country, which made generic medicines for asthmatics – generic of Advair/Seretide. But because of bad organization and beaucracy there is chaos in farmacies and there is no generics, problem is also with original medicine… I know, that it is difficult to write about it for bloggers who live in developed countries, but it is life in Central Europe, in the 21st century! In media was big affair because of thousands asthmatics, who didn’t have money for original medicines and because of exacerbations had to go to hospitals. But government makes nothing with that.
    I have my medicines from last precscription, but I don’t know what will be in next month. Is it normal in the year 2013? I think no!

    1. I actually haven’t ordered new prescriptions yet for this month – cuz I keep forgetting. I’ll do it today… They recently passed a law here in Israel that all prescription medicines have to have Russian (20% of our population comes from the former USSR) and Arabic (about 22% of Israelis are Arab) on them. Right now, medicines just have Hebrew and English. The law went into effect May 1 and apparently the drug companies haven’t gotten their act together in time and haven’t repackaged everything yet. And they can’t sell the drugs that they have that haven’t been repackaged yet. So people can’t get medicine they need because of this new law.

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