Yesterday I attended a screening of the film “Under Our Skin” by Open Eye Productions, which, I hear, is up for an Oscar.

Today I’m up at 4:30 am after a sleepless night filled with haunting images.

I knew this was going to be hard to watch, as I’d seen only the trailer a year ago and was SO distressed that I stated repeatedly that I COULDN’T watch the whole thing. The opportunity arose yesterday, with a friend urging me to come, and also a new support group forming an hour north of me in Corvallis that perhaps I could help.

So I went.

Although the sound was messing up horribly for much of the beginning, one of the re-starts had me hearing the opening line as someone saying “I thought I was going to die.”

I crossed my knees, wrapped my arms across my chest and hung on.

It is a brilliantly effective piece of work; more than once the large audience let out an audible gasp in response to an image or a phrase. It was definitely effective as evidenced by how deeply pained I am this morning. But I’m wondering if that is entirely a good thing.

The timing of all this is perfect, as it clearly shows how the “Healthcare Industry” has been screwing us over for their own profits for a long time and continues to by stacking the deck, twisting the facts and making up their own rules while we suffer and die at their feet. I wonder if ‘they’ slept any better than I did last night.

My own perspective and my own pain come from SO having BEEN where many of the folks portrayed on the screen were. In a discussion beforehand, I did realize that part of my distress over the trailer was in SEEING images of people as dysfunctional as I once was when I never actually viewed myself in that state. I mean, I lived it, I woke up every morning and WAITED for the pain to wake up and course through me. Even with the sound off, we could see one young woman mouthing the word “Pain, pain, the PAIN” and my eyes spilled over. There are a few photos of me during those years where I can see myself clutching my own hands to rather hold myself together, but no moving images of the times when I couldn’t trust my legs to get me across the room….of how I learned (when I actually trusted myself to drive) to manually pull my left leg into the car before I closed the door. I actually slammed my head with the car door once for forgetting the SEQUENCE of getting into the car. There were many months when I knew I couldn’t drive at all. These are not memories to return to easily.

The park ranger in the film speaks of driving home from a job he’d driven to and from hundreds of times and having to call his wife because he forgot where he was. Again my tears well up. I see myself clutching the steering wheel praying for a roadsign to tell me what highway I’m on and where I’m going. It’s a totally nightmarish experience to have out of the blue, but it’s a different kind of terrifying to hear so many others expressing the exact same thing over the years.

My perspective wasn’t only just my own, but the hundreds of folks’ who have emailed me over the years. They were all over the screen. The children got to us the most. The breaking hearts of the parents recounting how they were told there was ‘nothing wrong’ until it was too late was so hard to watch.

We watched footage of three Lyme Literate Doctors being persecuted while their patients wept. One shot shows that miserable piece of paper that states the insurance will no longer pay for a young woman in the middle of her treatment.

Now granted, the only ‘treatment’ dealt with in this film is the months/years of antibiotics route.

You come away with a sense of outrage towards the system and rightly so.

But I worry about what else we come away with. 

For over 8 years I have been the Unsinkable LadyB/Poster Child for RECOVERING from Lyme by allying with Teasel root tincture. In that time I’ve often felt like I’m trying to hold back this tidal wave of fear that charges towards me from an ever-growing surge of Lymers (I consciously choose to hold the more active word over referring to them/us as Lymies).  I have even been “quoted on Facebook” for my “I truly believe that you cannot heal if you are frightened”. And I DO believe that.

So where do we draw the line between raising awareness of something truly dangerous and spreading fear? If I had been watching this film as a newly-diagnosed Lymer or someone who SUSPECTED they had Lyme, well, I would have slept as badly last night as *I* did. I would be genuinely terrified.

I understand that the purpose of the film is to promote the exact kind of outrage that this twisted, distorted and frankly DEADLY Healthcare INDUSTRY needs to hear us shrieking about at the top of our collective lungs. I GET that.

But I’m always more tuned in to the individuals. Inaccurate tests. Doctors unwilling (or afraid) to treat. Treatments that cost tens if not hundreds of thousands of dollars that could make you much, MUCH worse before you get better and still not get entirely well. Talk of permanent damage. Talk of EIGHTY PERCENT of people with MS, Parkinsons, ALS and Alzheimer’s all testing positive for Lyme. EIGHTY PERCENT. Yes, the purpose of the film is to present this notion of how so much COULD HAVE BEEN PREVENTED. Unfortunately, I can’t help feeling for the folks who find that out after the damage is done – and we saw a LOT of them yesterday. It WAS painful.

But why don’t I feel utterly triumphant? Why couldn’t I watch all that suffering and just cheer “I BEAT that!!!”.

Because I had a SCARE last month. Probably coming on for MANY months. I had begun to speak of ‘gardening arthritis’, of ‘getting olde’, of ‘losing interest’ in both gardening and dancing.  An email comes in with mention of a Lyme nodule and I glance down at the odd lump on my middle finger with a flash of horror and begin researching feverishly. I feel the FEAR  beginning to grow within me. Then, fierce PAINS begin really racing around my body, I’m honestly feeling like I’m being bitten from the inside. So sudden that I think I must have HIT a knuckle on something and it hurts like all hell for a day or two and then stops just as suddenly. Uh-oh. Then it goes to a different finger on a different hand. 

I self test with Teasel (as I have done MANY times over the past 8 years, always getting a neutral to negative) only this time I get a YES. So of course I take it. My body continues to test yes every other day, so that’s what I do.

I wake up one morning with this incredible PAIN in my eyes. Really awful. I go straight to the bathroom mirror to see one whole section of my eyeball is pink and bloodshot. Now I’m panicking, my circulation is going all wonky. I awoke one night from a deep sleep with my feet so utterly frozen that nothing at all can warm them until I take two droppersful of Hawthorn and half a dropperful of Yarrow. During that same time my blood pressure had begun to act up noticeably which only Cayenne tincture will calm. At this point I’ve got a firm grip on one herbalist friend via Email and Matthew Wood on the phone. Among the three of us, we come up with a collection of herbs which help magnificently. Incredibly. During all this, I’m SO worried about my heart (my father died at 52 of a heart attack) that I’m TRYING to make an appointment at a low-fee cardiac clinic for a screening and EVERYthing is blocking me from getting there. I finally do, three weeks later than I’d planned, and I come through with SUCH flying colors that I should get a serious gold star. I realize that I am feeling better, stronger and clearer than I have in many months. (btw, both my gut and my research aren’t feeling a Return of Lyme, but rather Bartonella)

So WHY am I still not feeling utterly triumphant while watching that film? Because the FEAR began to vibrate. I also empathized with the people I saw – deeply.

In my head I know that precisely the scenario of knowing that the horribly expensive tests are grossly inaccurate, the horribly expensive treatments are no guarantee of recovery and the horribly corrupt Health Insurance Industry is going to do everything they can to line their own pockets and not care for us is what SHOULD have us learning to care for ourselves, but that is, as we know, a dangerous prospect to PROPOSE.

I tend to avoid Lyme support groups and forums because I very much choose not to Live Lyme. I’ve listened to folks quote levels of everything and strains of everything and they have a NAME for everything, but I don’t hear them necessarily getting well.

I probably expend as much energy trying NOT to wave bottles of Teasel around as a panacea as writing ABOUT it. I so detest anyone who preys on sick and frightened people in order to Push Product that I err on the side of backing off.

I don’t think this is all about SUBSTANCES as CURES anyway. I think it’s about attitude.

I looked at the other women in the ladies’ room after the film was over. All were pretty quiet and looked shaken, but I was the only one with red, teary eyes. So perhaps I responded far more deeply than most people might. They make the point repeatedly that “All of this COULD have been prevented” with early treatment. That’s important knowledge.  This film exposes the Board who wrote the guidelines for treating Lyme that the insurance companies ENFORCE with their refusals to pay and according to a woman in the audience, although they have been ORDERED to re-do it, NOTHING has happened about it in the past three years. That demands OUTRAGE, and lots of it.

But there are some images – some true, very human images that are still going to haunt me for a while yet.

My siege last month certainly had me feeling far more empathetic towards all the email Lymers, but perhaps it’s what caused me such deep pain in response to the film. It all wasn’t such a DISTANT memory. I suppose I do ‘worry’ some about the fear this film will stir up in many folks, it certainly doesn’t end with fireworks and happy singing.

I remember so very clearly that the most damaging words ever flung at me, about the time when I was at my worst, shaking all over and struggling to walk through a health food store, were flung by the clerk there: “You know, you NEVER get rid of it.” I FELT those words hit my psyche and my immune system like a cannon ball, and I let her HAVE it for being so thoughtless. It was a hateful and UNhelpful thing to say to someone in the state I was in.

Perhaps what she said was technically TRUE. But what’s TRUE for me is that I got OVER it (under it? THROUGH it?) REPEATEDLY. And not just limping along, but doing spectacularly well.    

 So I’m not sure just what I DO with all this. Process it, recognize it, and glean what I can from it.

This began as something of a ‘movie review’. Do I recommend this film to the class? Depends on who the class is. ANYone in the health care field, ABSOLUTELY, and the sooner the better. Depends on how good you are at having a very real DANGER presented to you and how well you are able to PAY ATTENTION instead of cringing with your hands over your head. A lot depends on how you handle fear. I think perhaps because I am overly aware of just how many truly sick and frightened people there are all around, I took in the images with some of that perspective. 

But then I look only at myself.

One of the devastating parts of my story, more so than losing jobs and homes and my health was the realization one day that a healthcare provider could no longer ‘see’ what was ‘wrong’ with me. When that realization hit, I don’t think I’ve ever felt so alone and frightened. Fact is, I sat in that fear for a good, long time and eventually realized that I needed to LEARN to take care of myself. That turning point resulted in my getting well. So while I would never willfully instill FEAR in anyone, who am I to yank it away?

 If this film upsets you enough that you make a clearer choice to take your own healing into your own hands (howEVER you choose to do that) then it more than did its job. If it sheds a bright light on the greedy people who caused much of the suffering, it DEFINITELY did its job.

Does it deserve an Oscar?……ABSOLUTELY.

LadyB 1/10/10