I have been looking through all of my medical records and scanning in important documents that may be used for the case studies that I have been in for the muscle disease I was diagnosed with. I have a medical record burning ceremony scheduled but before that I knew there were important documents that could be important for future genetic studies of the Doctors that have been putting together different studies on the length of my disease and date of onset.
I found my baby book which had a few documents that I scanned in the computer and sent to the Doctor’s out of the country working on my case.
It appears my first symptoms began when I was 9 years old. One year after I joined the ski team. As I read through the symptoms that I had when I was 9 I cannot help but see the resemblance to my symptoms now. The “purple streaks” mentioned are the “aura” that I get before a seizure although my medical notes state there is NO AURA. Even though it states patient sees “purple streaks.” The widespread pain I felt at that time is exactly what I feel now even though it is painfully, and I mean, painfully clear that this doctor believes none of my symptoms were real. He said so “psychosomatic.” He even states that I need to lay down when the pain is so bad but then says no fatiguability. How odd being that the reason I was there was that I was too weak to sit up and in so much pain I could barely walk.
Then my symptoms continued into the next year with urinary incontinence, which I also currently have experienced with the acceleration of the muscle disease and the seizures. I was seen by a urologist. Apparently, that urologist had seen me before and this little piece of evidence explained my patchy memory of a vaginal procedure done that my mother claimed to “not remember” although it is crossed out for my own privacy here in my medical notes.
Reading my childhood records has been triggering, upsetting, beyond upsetting. To see that so much had been done medically in my vaginal area before the age of 11. The wonderful age of 11 when it was decided that I would get coached by the ski coach child molester. It is as if I never had a chance.
What stands out to me most, even further than the neurologist telling my parents to not allow me to go to the clinic, AND to resume all physical activity is that in one fail swoop he destroyed my body. In his letter, telling my parents that I was not only faking everything, but to not allow me to rest, and to push me into sports, HE RUINED MY LIFE. Had he listened, believed, validated, anything then I would not have ever waterskied. I would not have damaged fragile muscle tissue that cannot repair itself, I would have never been in the sights of a child molester either. Because he did not believe my symptoms were real he sent me to destroy my body and allow someone else to destroy my body and mind as well.
I read all of my records. It was the laziest evaluation I have ever seen for someone with my symptoms. Had he done a biopsy like was done 30 years later, he would have known I had a muscle disease. I would have not been allowed to do sports which did irreversible damage. I had to wait for so many months to even get some of these tests done that some answers would have already passed!
It is still in question whether I have post polio. That is on the table now along WITH the muscle disease with unknown mutation and Lyme disease and my slew of other health issues.
And for anyone wondering, and yes I have been asked… being molested cannot manifest itself as a muscle disease in a muscle biopsy. You cannot fake a muscle disease, create a muscle disease finding on a biopsy, and psychosomatic or rape or molestation cannot give a person a muscle disease. The lack of this finding falls on the inadequate incompetent doctor who did not do his job and would rather say it was all in my head than believe me.
It kills me to see that. To read that. To see that he chose, encouraged, pushed, my family and my pediatrician to make me do sports even though I was there in so much pain.
One man. One man that I feel almost sealed my fate. I mean. He did in some ways. My muscles are wasting as are my bones and if the Doctors in England and Canada cannot find the cause and genetic mutation then there really is no saving me. Others with this disease do not do any of the activities that I did. They know it damages muscles that cannot repair. This ALL could have been prevented to the severe extent it has become had ANYONE believed me in my physical pain or the abuse that was going on.
Then I read my own letter to my grandfather and grandmother when I was miraculously better which my parents equated to church prayer. All I remember is one day I woke up and felt fine. No one knows why I went into remission and my disease came back 30 years later. The Mayo Clinic surmises it was anesthesia that triggered the relapse. And they have no idea what caused the initial remission. Who knows. But I was well when I was 10 even though apparently I had urinary incontinence, I went on to be in a commercial and continue back waterskiing and doing dance. I read my own handwriting at climbing to the top of the pyramid at 10 years old and skiing with my brother. I read it and thought, “ Had that one Doctor diagnosed me properly, or even suggested that it was not all in my head, I would not have been climbing pyramids, I would not have also been getting molested…if only…”
I scanned my documents. Sent them where they needed to go. I will burn the rest. I remember getting these documents in the mail many years ago and calling that original doctor on the phone and faxing him his diagnosis of psychosomatic and then faxing him my muscle biopsy results front he Mayo clinic saying I had a muscle disease. I spoke to him. He is still practicing medicine. Maybe after my phone call he will stop “practicing” and start actually DIAGNOSING.
One man’s words took away my worth, my childhood, and at 45 years old, still, my body.
After reading through the records I hand typed out what they said for my blog since some of my friends are blind and cannot read screen shots. As I wrote his words I started thinking about how one man really can try to seal your fate. One child molester. One bad doctor. One invalidating remark. A group, a family, a town, that does not believe you were sick or molested. Then I looked at these records along with the ones I have recently and realized how wrong they all were and how absolutely devastating that is. I knew they were wrong. But no one believed me. No doctor. No family. No one.
Until now. A righteous man stepped into my life, my husband, who validated MY LIFE. I wrote a poem about him, a quote really, “An evil man cannot seal your fate if a righteous man steps in his place.” I believe that.
Many an evil I have encountered but a righteous man took me away from that as best he could and has given me…butterflies, beaches, a daughter, sunsets, love, unconditional love and constant validation.
Don’t let one evil man seal your fate. (Or human). A good man or woman, God, nature, beauty, self love, dreams, aspirations, hope, can give you the fate you deserve.
I was 9 years old. “The areas of pain complained of were each explored closely, and none of these show any physical abnormalities nor evidence of tenderness. She does complain about pain upon palpating of many areas but I am not convinced that real tenderness exists.” This goes on to further state:
“We discussed with the mother today that there is some possibility that Bethany has developed a school phobia or a similar psychodynamic problem. The mother is not very accepting of this viewpoint but will try to normalize this child’s life. Specifically, we suggested that the child should attend school daily, should participate in sports and normal activities for her age and should not be allowed to go to the school clinic or in another way dysfunctional in school or at home. The mother is to observe the child for any objective evidence of illness and to call us back in two weeks with a report of progress in school. We certainly hope that you will be able to support our efforts for this child and her family. Sincerely, F. Thomas Weber M.D. “
Other hand written notes state initial thoughts “ ?neurologic disease – but so many variable complaints. I.e. M.S. ?psychosomatic” then you can see where he goes back and writes next to that “ a real probability”
The hand written notes of my exam state this “ ‘purple lightening flashes’ in both eyes. Pain at times in the chest, abdomen, thighs, arms, calves — essentially everywhere…..when pains are severe, pt feels very weak and must lay down. Has missed 10 days of school because of illness- or more. No auras…..no easy fatiguability.”
Next record is 4/13/83 and apparently I started being seen when I was 10 years old but had turned 11 on this second visit that is to see a urologist and reads to my pediatrician:
“Dear George: I saw Bethany in my clinic on 4/13/83. This 10 year old white female has a problem with incontinence that has going on for several months. …I have seen this youngster in the past….I examined her perineum today and could not see any obvious abnormalities….my tentative plan is to go ahead and proceed with an IVP in three weeks on May 4,1983 to look for an ectopic ureter. After that we will consider cystoscopy.
Dated June 4, 1983
Dear Grandather and grandmother,
I can’t wait for school to be over. I have so many things to tell you. First, I think you already know I’ve been in a McDonald’s commercial. I’m so excited to see myself on T.V. I’m on a ki group too. This is my 2nd year and I was on top of a pyramid and now I am doing a ballet with Andy by my side (on two skis). I know know how to ski on one ski with the rope between my legs. The third thing I wanted to tell you is that I just did a dance recital.”
Because no one can take away the beauty, especially a child molester and an inadequate doctor from 30 years ago…I move forward and will not give up…
Here is me at my faking age…
But I’ve moved forward …
No one can take the blue butterfly…
I have chosen LIFE