Wednesday July 16th seated at the Railroad Square Cinema in Waterville, ME; I wait as the movie ``Under Our Skin'' is about to play.
The little room quickly fills up and I remain quiet to listen to the conversations that stir as people arrive.
Each with their own purpose for being here, the conversation and mingling varies, I hear one woman say `Im here to watch this because my dog has Lyme disease and I have fibromyalgia''.
Another is relaying a story of a loved one diagnosed with Lyme disease and they discuss her treatment and testing.
The conversations go on, each here with a purpose; seeking knowledge about the misunderstood and under reported Lyme disease epidemic.
Each will interpret the movie `from where they sit', their perspective and experience in life and knowledge.
Just as they all sit to watch through different eyes of life's travels, so I sit; and just as all who are here I will be touched in a personal way, according to my journey; my life's experience.
As the movie progresses, I could tell many were seeing Lyme disease- as it really is, for the first time. There were expressions of `oh my goodness' and `I can't believe it' quietly floating about the room as the film played on.
I sat with my wife of 19 years and my mother, brother, sister and aunt. I occasionally glanced to see how they were responding through my own tear clouded eyes.
My mother was often looking to see if I was ok. My sister and my wife were quietly crying as stories and images flashed across the screen, so vividly and mercilessly reminding them of what I looked and sounded like over the past 5 years.
This is my perspective, the view from where I sit, filtered through my eyes, mind and experience.
I watch, being deeply moved by every scene, every doctor and every story that is shared.
As the videos of real people, just like me, roll across the screen, I see myself and relive the deep emotional anguish that only one who has been there can truly say `I understand'.
I remembered when I couldn't stand up anymore and the relentless mental and physical pain I felt every minute of every day as my entire body convulsed.
I feel the frustration and anger as doctors and specialists said they didn't know what was wrong with me or that it must be just stress.
I re-live the seemingly endless barrage of testing, some so painful; and the monotony of the same exams over and over with no answers.
I feel again the humiliation and embarrassment when top specialists treat me as though I'm making it all up.
I cry as I recall loosing my growing 18 year career, and think, how will we survive?
As the movie progresses my stomach cramps and ties in knots as I see the struggle with insurance and disability companies.
It was as though I felt the same stress and fear for each of my five denial letters from government and private disability insurers.
I get angry as I listen to the others in the movie share. I try to hold in my emotions and it is almost unbearable and I start to cry as I think about the battle Im in right now with our state healthcare to get coverage for treatment.
The same haunting voice inside says `I just don't want to do this anymore'. Im scared; how much more can I take?
I try to focus on the positive: Im getting better with long term treatment, much better. I can walk now, I can speak and write; but the unrelenting voice of discouragement overshadows all as though the infection itself has a voice and control of my emotions.
I see the children in the movie, the husbands and wives, and remember when I started getting better and my mind began to clear...
my children and my wife were hurting deeply and I didn't see it; what have they endured as their father and husband melted away in front of them every day for so long?
I remember my youngest son, only eight years old, saying `daddy I have a headache, I think I have Lyme' as he mimics my symptoms as any child mimics their parent as a role model.
The movie ends, I just sit, physically and emotionally drained. My head is twitching from side to side and muscle spasms start in my arms and legs.
My headache, that is..., my four and a half year old headache gets worse. As I stand my balance is off and my body hurts.
Emotion always makes my remaining symptoms worse. I want to stay to talk and answer questions, but both my wife and I are drained.
I get in the passenger seat, as im not yet allowed to drive, and my wife takes us home. I reflect on the movie as I calm down. If only everyone could see...truly see.
I think about the impact this movie could have for Lyme sufferers if those with the power to act use that power to effect change.
I think about how wonderful the timing is, with this movie showing as the Connecticut Attorney General has won his case against the Infectious Diseases Society of America,
the small group of people setting policy for the nations healthcare system in regard to Lyme disease testing, diagnosis and treatment guidelines.
He exposed their lies and financial conflicts of interests. He exposed their abuse of power and how they have not only rejected any opposing science but have also targeted physicians who treat in opposition to their guidelines. I think this movie is well timed.
My thoughts wonder to the battle ahead, for myself as a Lyme disease sufferer, and for those able to get involved in the political activism surrounding Lyme disease.
The voices of the sufferers alone will not win the battle, we need our treating doctors, the silent heroes in this war, to feel free to publish their effective treatments.
Im scared for my doctor, whom I have to travel far to see, will they be persecuted out of practice like so many who have opposed the IDSA?
They saved my life when others had labeled me a `medical mystery'.
We're home now, and depression once again takes over. I have Lyme disease, this is my reality. These are the glasses through which I see life from where I sit.
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank you for sharing this. Yes, your reality is one I also share.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
That was terrific -- do you have a link for that?
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Shaz,
I don't think there is a link. I think that BJK is W. Clark.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Ah, silly me! BJ, perhaps you could submit that to the Sun Journal. They just did 3 articles on Lyme in this morning's paper, including my press release for the showing of the film. I am hoping for a good turnout.
I just ran through the film on my computer this morning, and it's even more upsetting the second time around.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
bj,
if they go in there with an open mind; THE FILM WILL AFFECT THEM, and then they can understand your words better from a lyme perspective!
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Has anyone not seen the film yet? PM me, I'd like to tell you some interesting things about it.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I can not watch the film because it hits too close to home. I am telling others about it and trying to raise awareness of this hideous disease.
Posts: 6 | From NJ | Registered: Jul 2008
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