Childhood mystery solved . . . vintage enema jug.
I first knew shame as a little girl sitting on a cassocked knee under a priest’s gaze when I was told that women were ‘carnal’, like a flavour of ice-cream for grown-ups. Like Benedictine. Women were something forbidden and unknowable. A bit shameful. Like that mysterious enamel jug hidden in the bathroom cupboard with the spout in the bottom.
I had a front row seat to the tragedy of HIV/AIDS that made a shipwreck of the gay men’s community in the 1990s, when at 33 I was the first woman appointed Editor of Sydney’s biggest newspaper for queers.
The Sydney Star Observer was the journal of record for the gay community and was an influential and widely read newspaper—devoured as much for the Personals at the back as for the news up the front. Each AIDS death notice took up the space of a business card and there were the blackest of times in 1993 when two full pages of obits were published—a graveyard in newsprint. One gay man wrote of them as ‘shadows on the dance floor’, while I remember my address book with its crossed out names of the dead, mainly young men, as if it were a time of war.
I saw up close my dear friends monstered by a society that wanted to blame us and shame us for suffering from a sexually transmitted virus. Like Lepers and Plague Marys before us, there were those who wanted sick gays to be quarantined. And so we danced through the streets at Mardi Gras, with frangipani in our hair, when love in the time of AIDS was more vivid because it was so brief. When summer’s lease had all too short a date.
Lurid Ads on TV had showed Death coming to get us, a Grim Reaper figure (carrying a bowling ball!) evoking the Black Plague. Or was it gays coming to get straights, in bowling alleys? Yes, that damn homophobic anti-AIDS ad won awards, which is the best commentary on the worst of times. The antidote to gay shaming was of course, gay pride. And visibility.
Brett died with his back covered in painful herpes lesions. He used to be so particular – a style queen. Curly headed and sturdy with red bib-and-brace overalls showing off his muscly bronzed arms, he was a Pretty Boy. Until AIDS. Then ‘Absolutely Everything Darling’ went wrong with his body. As he wasted away this gorgeous ex-pat Kiwi who shared my love of *Pinky Bars was at first disgusted by the raft of symptoms that plagued his body. Then ashamed. We talked about how us girls got more used to messy bodies, with menstruation and childbirth. How those dear boys would have loved to have lived long enough to be troubled by their prostates.
Nasty men in collars claimed AIDS was God’s vengeance on sodomites. Why God is so selective has always puzzled me? If he’s gnarly about gay sex, where is his vengeance on priests who rape little girls and boys? They live, seemingly, long and untroubled lives in many cases: ‘Cup of tea, Father?’
So you smoked?
I see and smell shame every time I am in a waiting room full of people dying from lung diseases. The ex-Navy man who started smoking during the war when he went to Japan, cigarettes were part of his ration. The kindly woman who was a nurse and says she should’ve know better. The serene yoga teacher with Copd and lung cancer. Since dead.
At the hospital rehab I pass fat people, (well I can’t pass them, actually, the corridors aren’t wide enough) and they give way to O2 tanks and smile at me encouragingly as I do the dreaded 6-minute walk test.
‘Did you smoke?’ some will ask, as they too stop and catch their breath, yet no one asks them how many biscuits a day did they scoff? No, they have heart disease. They have diabetes. It’s bad luck. Whereas we are bad people.
‘Did you smoke?’ is the question most often asked of us with Copd. And we hate it, according to a new survey presented at the 1st Global Copd Patient Leadership Conference in Madrid this November.
Except for a few variations due to our differing healthcare systems, the same core issues were experienced around the globe, according to those attending the historic Copd Patient Summit.
A ranking of our concerns:
- Stigma / shame and blame issues.
- Low levels of public awareness.
- Late diagnosis.
- Limited resources and funding compared to other Long Term Conditions.
- Little research compared to other LTC’s.
- Perception and portrayal of Copd as a disease of the elderly yet over 50% of the world’s Copd population are 40-65 years old.
- Low levels of patient advocacy / activism/ involvement.
- Difficulties and inconsistencies surrounding air travel with oxygen.
- Lack of media attention / interest.
- Poor access to Pulmonary Rehabilitation—even where available it can vary in quality, be far from home, often long waiting lists etc.
And then there were none.
We feel the stigma of our disease in other ways too. Copd is the 3rd largest cause of death in the USA, so there must be a lot of of research, right? Wrong. Currently there are only 780 ongoing trials for Copd. This pales in comparison to the over 41,000 trials taking place in cancer research. Copd attracts very little research money compared to other, more popular diseases like breast cancer, heart disease and brain tumours. It’s like pandas versus Tasmanian Devils versus vultures, which I have a growing affinity for, and which may be my totem animal.
What if you had a sky burial and nobody came?
Vultures in Asia and now Europe are 99 per cent extinct due to ingesting diclofenac, a vet drug used routinely in cattle which is lethally toxic to vultures alone. Unlucky are the vultures who have got in the way of squillions of dollars being made by the feedlot industry. Big Beef, meet Big Tobacco.
In the end, we can refuse to feel shame for getting sick from a legally available product that, when consumed as directed, kills half its users. Governments talk about trust, but can you really trust any government that lets the Tobacco Industry kill its people – for a price. Governments should feel shame for the blood money they extract by way of cigarette taxes.
I have previously described having Copd as being like coming out (see post ‘Coming out with Copd)’. It’s not easy to wear oxygen in the street. And like coming out, you do it over and over again. But if we are invisible, we will fail to get help.
In facing the adversity that is Copd, the first rule of survival is to know that the disease is fought in the mind ahead of the body.
Shame will make it harder to accept healing as your right. To expect a cure to be found. To ask for our fair share of research dollars. To be treated with the same respect as anybody else with a terminal illness. Be out and proud living with Copd.
For Brett . . . Cadbury Pinky ‘Kind of Kinky’ with Marc Hunter, NZ ad 1976.
• See the UK’s Vanessa Smith’s report back on the Madrid conference in her great blog, Copd in Focus.
http://copdinfocus.blogspot.com.au/2014/11/report-back-from-the1st-copd-global.html
Click on the title if you want to say something.
The Departure Lounge 
Good one Barb
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Of all the ’emotions’ (and it has to be one, natural or not), shame is the worst for me. I refuse to feel it. I am a shameless copd’er. I think it’s what others try and try and make you feel, unlike remorse which is a natural feeling you get when you KNOW you did wrong to somebody. And breathe…
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‘Shamless copd’er’ love it, Bob. Thanks for dropping by.
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I’m sorry to hear about the stigma that people with lung diseases face and glad to know you’re standing up to it!
So sorry to hear about your recent bad spell, but pleased that you’re getting over it, and also pleased that you’re writing. I’m going through a slightly bad phase myself, hence the silence on my blog- but hoping to turn a corner soon.
With much admiration and best wishes
Ms. O (I like that moniker!)
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Thank you Ms. O.
O is the most important letter in my life!
It’s a special time of year for banking memories. Sending blessings and a warm whoosh of angel wings your way.
Happy Christmas, x Ms. B
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Hi Barbara, I love your blog. I hesitate to say this but feel I must. I agree with all you are saying about stigma and COPD. I have a number of (at this stage) invisible serious conditions and am staggered at the comments people make so inappropriately. Everyone is suddenly an expert and yes, people believe a lot of myths and misinformation… but fat people are some of the most blamed and shamed people out there. Cruelly shamed by medical professionals, by people close to them and even by complete strangers. Addiction to food is not different from or easier to deal with than addiction to smoking. Of course not all COPDers smoke (I never have) but that doesn’t make me morally superior. Heart disease and diabetes also happen to skinny people. All fat people don’t have bad diets/poor exercise habits. Some people have to take medications which cause weight gain and may have conditions which prevent exercise. (I am a skinny-ish one at this stage but I am no longer able to walk any distance or do much exercise of any kind). It’s a whole chicken-and-egg argument which surely we don’t need to have. Judging anyone from the outside is a bad idea. I think this was just a little slip-up because you are always incredibly thoughtful. We absolutely never know what people have been through or are going through unless we get close enough for them to want to tell us.
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Thank you for your thoughtful response and close reading of ‘Dying of Shame’, Sarimaree.
I did hesitate to talk about a hierarchy of disease ‘likeability’, but that’s been my experience. That breast cancer, say, or heart disease, are seen as more ‘sexy’ and ‘worthy’ and attract more funding than Copd and lung cancer. Emphysema is dismissed as a disease of old men, when younger women are its fastest growing victims.
The post was in no way meant to join in fat shaming. And if anyone felt that, I am truly sorry. Not only is over-eating an addiction, like smoking, our governments have let us down in allowing our food to be tampered with. An excellent documentary, The Men Who Made Us Fat, uncovers the conspiracy around food.
http://vimeo.com/44450267
If you have a smoking related disease, you will experience blame and shame at some part of the game, as you yourself have acknowledged. When you wear a nose hose in public, nine times out of ten you will be asked if you smoked. Or, you will be pointed out as “an example” of what can happen! You must overcome your own guilt and throw off society’s condemnation in order to survive. I don’t want pity, I want research dollars. I believe this is a treatable condition. And the cause could be wiped out by banning cigarettes. Shame on them, not us.
Of course, not all of us with lung disease are thin. Many are overweight, unfit, deconditioned and victims of bad eating habits. The wasting occurs with more severe disease. And God knows food is one of the few comforts left to us in end stage! I weighed 38 kilos before I found a response to Copd anorexia, as I call it.
I hope you will take away my larger point that shame and blame is stopping us with Copd from getting our fair share of help and hope.
Thank you for your contribution. You have made me think, Sarimaree.
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Thanks Barbara. I did take away your intended message, very strongly and I appreciate what you have just written. Your comment on overweight people was in the context of the bigger shaming and blaming issue. You are so right – illnesses have a hierarchy of ‘ok-ness’ (I have written about this in Hecate magazine using Susan Sontag’s ideas about the meaning of illness) and it’s the research dollars COPD needs!
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Wow – what a commentary. First, it’s amazing how much is swept under the carpet, as the cliche goes, when people don’t want to believe it’s true. There’s an old country song that says something like, ‘if it hurts, hide it.’ That’s the way it was in the years I was growing up on a cattle ranch in Kansas and unfortunately, not much has changed. Heaven forbid two individuals of the same sex touch each other in public. I really didn’t understand the impact of Aids on the gay community until I read, “The Band Played On” sometime in my 30s or 40s. I do hope I have the title correct. Recently a major television network did a documentary of how women in the southern part of the US are the fastest growing population of individuals with Aids. However, even with free clinics for treatment, the women will not come in for treatment because of the stigma attached.
In the US we are currently seeing television ads about pharmaceuticals for COPD. However, the ads don’t educate and that, in my opinion is what needs to happen. We have more young people smoking although we’ve come a long way in stopping smoking in all public places.
I spend most of my free time doing advocacy of one kind of another and it wasn’t until I started engaging with other bloggers like yourself that I understood the real significance of COPD. And, you are so right, we have so many illnesses that don’t get the funding they deserve.
We’re always begging for money for mental health research and when it comes to shame, OMG. The last thing in the world you want to do is tell anyone that your husband is in the hospital again because he simply can’t cope with what’s going on around him and it set off another round of bipolar happenings. Hundreds of thousands in the US military still won’t get mental health help when they know they need it because they know it will hurt their career. Talk about shame being stamped into your way of life.
Shame – yes, I know shame. It’s everywhere in my life. It hit full force when I had to realize I wasn’t perfect and never would be. Talk about a major character flaw.
Barbara – the terrible reality is that COPD and Aids is probably never going to get the attention and funding that it deserves. It’s the same with mental illness and a host of other issues. But, we cannot give up the fight.
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I know, I know – my reply is long overdue. I am so far behind in my reading yet again! I have been busy though – lots of doctor’s appts still & my sleep study where I found out I stop breathing 25 times per hour & my O2 levels drop to low 60%. I now have to shop for the most expensive CPAP machine because (of course) I have SEVERE sleep apnea (doc’s words).
I am hit with the triple whammy of invisible illnesses – arthritis, COPD (emphysema, asthma & lung nodules) & BPV (benign positional vertigo so my head has no idea which direction is up half the time) along with the most visible illness – morbid obesity. Even though I dread the day I have to drag along a cylinder, it would almost be less embarrassing to have an outward sign like oxygen to show people – Yes, you idiots I am really sick, not just fat & lazy! And it’s so aggravating to wait so long for pulmonary rehab & then be told it would be too dangerous for me to participate & so they won’t accept me in the program. You should have heard my pulmo sounding off about why I couldn’t participate while sitting in a chair so I could learn breathing techniques & modified exercises!
I am pretty alarmed to learn about the vulture population when I have been prescribed heavy duty doses of diclofenec for arthritis. I was thrilled when I learned there was an external application for the pain since my stomach is like swiss cheese after so many years of NSAIDS. Now I have to worry about something else?
Thanks so much for keeping me on my toes with your thoughtful posts!
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