Bernadette [HD] starts by communicating the widespread lack of knowledge about CMT on the part of the general public in America, and makes the point that many people don’t have a clue that “Charcot Marie Tooth” has nothing to do with dental work, which is why even professionals prefer to talk about it as “CMT”, and the involved explanations which go with it are frequently tuned out by individuals who have no comprehension of medical jargon.  The general consensus is that the way to get people to understand “CMT” is to tell them that it’s a form of muscular dystrophy.  In some cases, it can be hidden for a long time before symptoms become obvious.  In many cases, individual symptoms are identified and treated, but no name for the overall condition is given.
This state of affairs has not been helped by the fact that some individuals who have had it, could and did, with varying degrees of success, manage to hide it.  Some of this behavior has been motivated by fear of job discrimination, the probability of not being able to get insurance, and societal stigmatization of those who are “different” from the “normal” in any way, including the disabled.  Sound bites from both laypeople asking questions about CMT and neurologists and other specialists giving explanations are prominently featured in the movie.  Some of the widespread general ignorance of CMT and how it affects the lives and physical functioning of individuals who have it additionally may have resulted from a lack of knowledge on the part of those affected, because later in the movie, some other individuals with CMT are given a chance to discuss their experiences seeking treatment and explanations for their conditions, and have said that they have experienced misdiagnoses and miscommunication from the medical professionals who really ought to have been more educated about CMT.  Indeed, in the Q&A session held on the stage after the January 29, 2014 screening at the NYC Angelika Film Center, it was said that not only do non-specialist doctors often fail to properly identify CMT when individuals present with it, only 30% of neurologists are aware of CMT!
The movie shifts from the general to the particular when Bernadette Scarduzio and her family are introduced, and Bernadette’s experiences with surgeries and therapies undergone in an attempt to ameliorate the effects of CMT on her body are discussed.  Bernadette was said to have had 20 surgeries (some to correct results of other surgeries), and is seen to undergo physical/occupational therapy, as well as specialized massage therapy, and chiropractic, all of which she characterizes as “temporary fixes” against inevitable future degeneration of her physical condition.  Unlike many, she has been fortunate enough to have had custom orthotics (both she and her father had acquired high-tech, highly specialized and expensive leg braces), and to have gotten insurance to pay for a scooter well before she seemed (to neighbors watching her use it) to seem to have had an obvious physical need for it.  One mystery which isn’t explained in this movie is how a hairdresser managed to have had such good insurance, (even a successful one with his own salon) and how could the rest of us get it.

Though Bernadette is named for one of the better-known Catholic saints, it is made clear that she is far from saintly herself, as she smokes (both tobacco cigarettes and weed) though she knows it isn’t good for her; she is hardly the ideal patient, one of her therapists comments that she doesn’t work as hard on her hands (in physical/occupational therapy) as she should; and at one point, she lives with a same-sex significant other, who assumes many aspects of her day-to-day care while living with her.  Even though their living-together lesbian lifestyle would be frowned upon by the Church, she still identifies as Catholic, and is seen to participate in some Catholic activities, such as lighting votive candles at a grotto.  In spite of an unseemly brashness, perhaps characteristic of teenage rebellion, visually portrayed by the casual, skin-baring clothing she is seen to wear, both in daily life and in a photo session with David Needleman, an eminent NYC photographer, Catholicism pervades her living environment: a bracelet featuring colored images of saints frequently adorns her wrist, and rosaries are looped casually over her bedpost as well as occasionally being worn around her neck as fashion accessories.  Catholic statuary is seen in her parents’ house and yard.
Bernadette’s late father John had CMT, and though he is portrayed in the movie as having had less severe symptoms than Bernadette, the fact that CMT was hereditary led him to have had a serious discussion about it with his future wife, Maria, who opted for the marriage and motherhood anyway on the rationale that it was a “fifty-fifty chance” that their children could have it.  At the time, 25 years ago and counting, the medical establishment believed it was extremely rare if not nearly impossible for a girl to have it, because it was X-chromosome linked.  John and Maria first had had a boy born without CMT, and thus, as devout Catholics; “We prayed so much for a girl…and made a promise that if the baby was healthy in any way, they would name her after St. Bernadette. She was a beautiful little girl when she was born, but unfortunately the doctors were wrong. It’s equally hereditary in females and males, and Bernadette ironically has it worse than anyone in the family.” John reveals in the film, as he discusses his family history with C-M-T.
Paterfamilias John dies suddenly during the time the movie is being made, of causes not related to CMT.  It had been his dream to have his family, including Bernadette, go on pilgrimage to Lourdes, but it had not been managed, financially or logistically.  However, shortly after his death, The Kirby Foundation raised the money, and the family pilgrimage to Lourdes was included in the film. During the time spent on the pilgrimage, Bernadette is seen to behave in a much more reverent and proper fashion, wear subdued clothing, and surprisingly, to have acquired glasses.
Maria repeats the Church’s recent exhortation to look for spiritual/emotional healing instead of physical healing from the Lourdes pilgrimage, where Bernadette is pushed in a manual wheelchair during crowded public processions, and pilots a borrowed electric scooter from a similarly disabled tour guide during a solo visit to the grotto.  Bernadette is shown afterwards using her own scooter in NYC, and it is explained that while the visit to Lourdes had resulted in a greater emotional acceptance of her disease, the aspects of CMT which affect her physical condition have gotten worse.   It is here that the visual medium portrays the degenerative nature of the condition in terms of how it affects Bernadette’s daily activities.   She is seen driving the scooter through streets, where previously she might have walked, however clumsily and unsteadily.  She had previously been able to put on her form-fitting, customized, $65,000 leg braces by herself, at the end of the movie, she could not do so without assistance.

Bernadette said: “This is the first known documentary of anyone with Charcot Marie Tooth. This has never been done before, ever. This could change the face of this disease. It has the potential to be huge and I won’t rest until it is. But that’s just a small time capsule of my life and I’m thankful to have it. Now I’m excited for the next time capsule. I get invitations to speak all over the world and I am thrilled to speak as often as possible.”

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