Monday, October 18, 2010

Of Silver Bullets and Bias

When I was a little girl I had a horrible fear, bordering on obsessive phobia, of werewolves. It all stemmed from a single BETA tape. My grandfather had taped Star Wars onto BETA and given it to my parents. Star Wars is the movie that taught me to talk. My parents would proudly announce, to anyone who was listening, that they'd plonk me in front of Star Wars while they got ready in the morning.

From tv saturation with Star Wars to daycare. Rock on 80s parenting.

But before the Star Wars began, there was a preview for a werewolf movie. I would run from the tv and wind myself into the curtains and cry and shake horribly. And when I was sure it was safe, I would return to the tv.

To remember this, it must have been excessively scary. Later, as a child, if it got dark and the curtains hadn't been drawn, I would look outside in fear, worried the werewolves were sitting outside waiting for me to be alone. We had an alley that ran behind us and we often had a problem with dogs roaming. I had hideous anxiety as a child.

I remember though, that in the preview there was something about the Silver Bullet. The single weakness of these beasts. I would dream about silver bullets for years to come. I finally got over the werewolf fear in counseling in my 20s.

When dealing with an overwhelming illness, or trauma of any kind, we all seek that Silver Bullet. Once found, no matter how hard, it will end that horrible monster plaguing your life. It's a desperate search. Because we're all different, because we all have different reactions to illness, because illness is so different for every single person, the search continues for each of us.

And it's a marketers dream! Just have a look at what this search reveals: Arthritis on Trademe

A woman at Playcentre once approached me about my illness. She was very kind and compassionate and listened as I tried to make sense of what had happened to me. She then broke into a spiel about Ganoderma. She pulled out a bright red booklet and told me to take it home and give it a read. She'd ring me that evening and talk to me about the...PRODUCTS.

Yes, it was a marketing scheme (scam?). A multi-level marketing scheme, similar to that of any other pyramid scheme. Amazing claims begin to pour out of the literature. It clears up anything from acne to MS. Multiple Sclerosis? I was stunned. Of course I wanted in on this! A single tube for $22.95 could cure all my woes.

We looked online and there is some interesting research. It's hard to tell what's real and what's not. It's hard to go past personal 'testimonies' about the power of the product. Because we wanted me to be well so much I almost bought a tube. It was when the woman rang that evening and began her talk about how it had cured everything from her cavities to her recurrent vaginal yeast, we put a giant block up and told her we weren't interested as we were trying other forms of alternative therapy.

She tried and tried for weeks and finally got the message. I never did try it, although I have thought about it from time to time.

I spent a lot of time with a homeopath in Nelson. She is beyond brilliant and I adore her for the emotional space and support she gave me. I saw an osteopath, equally brilliant, to help with the pain. I have since seen another homeopath here in Wellington, not quite so brilliant.

I've tried herbal preparations. I've rubbed myself to the point of stench with various poultices, creams, rubs and drunk every sort of herbal tea you can find.

I've gone gluten free, dairy free and lived on raw juices.

Did anything make a difference? Well, actually, the very first homeopathic remedy I tried I think was the most beneficial of anything I've done in 3 and a half years. In agonizing pain, I sent an email to Selene Homeopathics (can't say enough fab things about them) and the homeopath rang me back and talked to me. He sent me a remedy and within a day or so I felt a major improvement. Since then, not so much.

I've spent literally thousands of dollars in treatments. Chiropractors, the crazy lady who waved her hands around me to dispel the energies, yoga, counseling, tablets, greens, dried herbs, liquid herbs, vitamins, oils, books, veggies, crystals, aromatherapies, bee products, etc.

Nothing has been my Silver Bullet. Nothing has ever met the promises on the label. I've often questioned my rights in returning the product, but is it a gamble to purchase the product to begin with? Do you just suck it up and give it away?

Things that have helped: Ibuprofen and Voltaren rubs, discussing anger and the emotional impacts of increased cortisol on the body, heat and sleep.

I met with a herbalist on Friday of last week. I sought him out to help with the gallbladder pain but mentioned the guilt and sadness I feel about the twin loss. I enjoy meeting with alternative practitioners; in fact, I adore them. I enjoy anyone who seeks out the alternative reasoning behind illness.

Because, in my case, my illness lacks so much understanding and no one really knows the *why* of genetic disease, there is often a lack of empathy and support from your specialist. I like when someone looks into my eyes and says, oh you've got a brown spot over your liver, and then delves into the emotional responses.

I guess you get the anatomy and physiology from your specialist but not a lot more. Your GP tends to ride both sides. I think having someone say, oh how are your emotions on the steroid? Are you doing ok? is so, so important. Because no one actually crosses that boundary in real life. No one asks you HOW you are doing in response to drugs, money problems, work issues, child rearing. And if they do, they don't quite know how to respond to the negative.

I've found people either want you to say you're fine and everything is perfect or they want you to be absolutely at the last straw so they can save you. There are a few wonderful people who know how to ride the fence and ask the right questions. Other people, at no fault of their own, don't know HOW to deal with the reality of living a life compromised by illness.

People will say, oh your situation makes me feel so sad and powerless, I can't imagine how you feel. I think that's the thing. I don't know how I feel about it either. If I try too hard to get in touch with my feelings I get overwhelmed and sad and despondent. If I ignore it, I ignore my body's needs and what's going on in my head and my heart as well.

It's hard learning the art of being unwell. Some people get you're having a bad day and some people just can't imagine having a 'bad' day because they often overlook their own feelings and needs. I think we're trained to push past any sort of 'personal weakness' that we just plow through the majority of life, completely unconnected to our body, mind, heart.

I think being too connected to the unpredictable, to the illness, to the weakness and the sadness allows you to be a victim. It's so easy to fall into the victim trap and there are many, many people willing to take advantage of that. I can think of a story of an ill mother who spent thousands of dollars with an 'alternative' gp who sold her a billion products, loads of new-age tests and basically just rode the ride of stripping her of her own confidence and bank balance.

Conversely, being too unconnected to the reality, to support and give empathy and love really does rob the patient. Just because I look well to you doesn't mean I haven't spent the morning in hell trying to get my hands to open up enough so I could feed myself, get my kid dressed and drive her to the playdate we're meeting at.

Because I need to operate on so many levels, including operating heavy machinery (ie, a car), I can't take the pain killers I need to control the pain. So I wait all day until I've completed my list of To Dos and then I take them. I may be in complete agony but have learned it's not ok to show those signs and feelings. I might be completely in my head, counting, using distraction techniques, to control the pain and you see me as aloof or somehow lesser.

I remember wearing a pair of slippers to Playcentre one day and having someone ask me if I was wearing them because I needed them or because I couldn't be bothered getting dressed. What is it about my illness that allows you, gives you complete permission, to be a total asshole?

I'm wearing clothes, have fed, dressed and brought my child to Playcentre. I've worked at the craft table and cleaned up paint pots and here you are asking me if I couldn't be bothered getting dressed? I quietly replied that my feet were so swollen I couldn't fit them into sneakers. I would have liked to include an F-You and a Piss Off, but I didn't. Because, even if I'm feeling like hell, I am required to be polite and conform to society, but how funny that you aren't.

Because if I respond with the way I am actually feeling and try to educate you, I'm seen as bitter or a victim or an attention whore. I had someone point out that I rarely ever spoke about my illness so no one knew how to approach me. And I responded that it wasn't true -- I actually did talk about it a lot. I let people know my hands were hurting so I'd go to something that didn't require their use. Or that I was tired and needed to sit, so I'd go read stories. Just because you weren't listening, well, that's not MY problem. And yet it is.

When I did openly talk about the fears I had, I was told I reminded one of the elected officers of 'this person' they knew who did nothing but whine and agonize over their own illness. So I'm instantly painted with a brush of your own personal bias? How is that fair? How is this giving the understanding and support Playcentre is so known to show? That humanity has claimed as a separation from the beasts of burden?

When I began referring people to The Spoon Theory PDF download, more and more people began to thank me for helping them to understand what chronic disease is like. Not everyone read the story and some said it was too hard to read so they stopped. Fair enough. I imagine it is terribly hard reading the reality of someone young, stricken at a young age, with the rest of their life as complete unknowns filled with hardship. But it needs to be read. And passed on. And shared with those we love and those we hardly know alike.

* An Open Letter To Those Without Invisible Disability Or Chronic Illness …


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